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He drooled, his food dropping out of his mouth and plopping onto his plate, a shocking sight for me, a teenager at the time. My beloved grandfather had lived such a distinguished and well-mannered life — how had he come to be so fragile and old? It wasn’t how I wanted to remember him.
Dealing with aging parents and grandparents is common. About one of every eight people in the United States is an older American. During 2005, some 37 million Americans turned 65 or older. By the year 2030, the number of elderly in our country will practically double, to 71.5 million. Although these statistics represent significant numbers, they don’t at all reveal the complications involved in caring for an aging family member. The reality is much more personal.
Today I find myself again in a nursing home. The picture of my grandfather — unshaven and sitting hunched at a table in his white T-shirt — invades my mind as I now feed my mother-in-law. She resists eating, and I wipe excess food from her mouth.
Did you know ...
that since 1993, federal law has offered some support for working caregivers through the Family and Medical Leave Act (FMLA)? This allows eligible workers up to 12 weeks a year of unpaid leave for family caregiving without loss of job security or health benefits. (Source: U.S. Department of Labor)
Did you know ...
that more than 97 percent of people 65 and over reported that they had a regular place to get medical care, and that only 2.5 percent said that they failed to obtain needed medical care due to financial barriers? (Source: Administration on Aging, U.S. Department of Health and Human Services)
Did you know ...
that more than 6 million people age 65 or older in the United States need long-term supportive services? (Source: Administration on Aging, U.S. Department of Health and Human Services)
CONSIDER THESE FACTS:
Of the approximately 37 million Americans 65 years old and over, 38.6 percent of those not institutionalized reported to be in very good to excellent health.
10.5 million noninstitutionalized older individuals live alone.
More than half of the older noninstitutionalized individuals live with their spouses — about 18 million, 72 percent of the men and 40 percent of the women.
More than 60 percent of those over 65 years old are female. Half of older women age 75 and over live alone. The fastest growing age group is women over 85.
In 2000, a relatively small number, 1.56 million of the 65+ population, lived in nursing homes, with half being age 85 and over.
Another 5 percent, or about 1.75 million, live in senior housing of various types, many of which have supportive services available to their residents.
The expected average age of people in assisted-living centers was 85 in 2000. Women made up 79 percent of residents. Fifty-two percent of assisted-living residents had some form of cognitive impairment.
The average age at independent-living centers is in the mid-80s.
The average age in nursing facilities is in the 90s.
RESOURCES:
Books
The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, Nancy L. Mace and Peter V. Rabins, Warner Books, Inc., 2001
The Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help, Joy Loverde, Crown Publishing Group, 2000
A Family Caregiver’s Guide to Planning and Decision Making for the Elderly, James A. Wilkinson, Fairview Press, 1999
Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive, Claire Berman, Henry Holt & Co., Inc., 2001
Internet
AARP: Care and Family www.aarp.org/life. Select Caregiving to find pertinent articles, including “ Involving the Whole Family in Caregiving,” “ Long Distance Caregiving,” “My Parents – How Do I Know If They Need Help?” “Balancing Work and Caregiving,” “Community Services That Help with Caregiving,” and more.
Caregiving.com www.caregiving.com offers solutions for the everyday challenges of providing care to an older adult, including caregiving tips, information on the stages of caregiving, an online support center, information on caring for the caregiver, answers to questions, and more.
CareGuide
www.eldercare.com provides a care guide that features a full range of services, articles and resources for elder care.
Children of Aging Parents (CAPS) www.caps4caregivers.org. CAPS is a nonprofit organization whose mission is to assist caregivers of older or chronically ill adults with reliable information, referrals and support.
ElderCare Online
www.ec-online.net presents information, education and support to families caring for aging loved ones, especially those coping with Alzheimer’s disease and related dementias.
Family Caregiver Alliance
www.caregiver.org provides information on the programs and activities of the Family Caregiver Alliance, including national and local caregiver information and advice, etc.
Family Caregivers Online
www.familycaregiversonline.com provides online education and information resources for family caregivers of older adults.
Faith in Action. www.fiavolunteers.org. Faith in Action is an agency that provides great nonmedical assistance. Faith in Action is an interfaith volunteer caregiving organization. These volunteers work together to care for their neighbors who have long-term health needs and help with such tasks as picking up groceries, running errands, providing transportation to a doctor, making a friendly visit, reading or helping pay bills. Faith in Action has local sites in 49 states, the District of Columbia, Puerto Rico and the Virgin Islands. Note to all: This is the ministry for which Dick Freed, our new DP Bible study writer, works. Maybe we can get something extra from him.
National Alliance for Caregiving
www.caregiving.org supports family caregivers and the professionals who serve them. The Web site provides access to a searchable database of reviews and ratings of books, Web sites and other resources for family caregivers. A list of links provides information in the areas of caregiving, health care and disease- specific resources, living arrangements, Medicare, Medicaid and federal benefits.
National Family Caregivers Association (NFCA)
www.nfcacares.org was created to educate, support and empower caregivers of chronically ill, older or disabled loved ones. This site provides a toll- free telephone number to access professional caregiver advisory services.
The Eldercare Locater will tell you which local agencies provide services and will refer you to the area agency on aging in your parents’ community.
By phone: 1 (800) 677-1116.
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My husband, son and I have finally settled her down after walking with her as she scurries relentlessly along the hallway for hours, retracing her steps countless times along a 50-foot corridor with a determination that reflects the habits of her earlier life. Yet now she’s aimlessly hurrying but going nowhere. Perpetually walking, she has no time — or inclination — to eat, but she needs to eat because she is losing weight. While I’m feeding her she sits, but she can’t rest. She straightens out the place mat for the 10th time, folds and refolds her napkin, constantly trying to get up and resume her phantom walk. She mumbles hints of words we do not recognize.
We’re in a dining room full of people who are lost due to Alzheimer’s disease. They’re disconnected from the world, their past and their present. For many, their children, like us, rarely visit because it is simply too painful not to be recognized by your own mother.
Grandchildren dread the visit too. Imagine having some of the other older women pinch your cheeks, hold your hand and hug you as if you belonged to them. My 10-year-old son feels a deep sadness and dislikes being in the nursing home. Who are these people, and why am I here? he wonders. His own grandmother doesn’t know him anymore, and these total strangers act as if he is family.
The confusion and pain extend to us as grown children as well. And then there’s the guilt. We should visit more, we should do more, we need to call, send gifts, come over … but why? The gifts are meaningless, the calls are to an empty receiver held by a person who can no longer speak, and the visits are excruciating and empty — for everyone. And then there’s Dad. He should visit his wife, but he can’t cope either. Besides, Dad’s health is failing too.
We’re just one family out of 22 million working American adults who help take care of a parent or loved one. We’ve been termed the “sandwich generation” because we’re between aging parents and young children. We’re providing care to elderly family members, who are becoming more like children, and our children, who think they don’t need parents!
As caregivers, we’re overwhelmed. There is never enough time. The guilt is great. The stress is greater. We have less and less to give each other. Often as a result all our relationships get strained, including our marriages. There is a real, unspoken fear among us as well: Will we face this same future? And many questions: Does anyone relate? What about health-care costs? What are our needs and responsibilities as caregivers? How should we as Christians respond to the needs of our elderly parents?
The answers are varied. Each family has its own set of challenges, including family history, economic conditions, proximity, etc. In our case, we live 800 miles from my in-laws — my mother-in-law in a facility for Alzheimer patients, my father-in-law still living at home but with heart problems. Each situation is unique, yet the elderly and their caregivers have common needs.
What do our aging parents need?
They need to be heard. Not too long ago they were the ones calling the shots and running our world. They continue to have ideas, opinions and great stories. One gift we can give to aging parents is to listen to their stories — even if it is for the 50th time!
They want to feel needed. Even in minor things, when possible, they need to maintain their independence and self-respect.
They need to feel loved. Like all of us, they want to be accepted and included. Regardless of their physical and mental condition, they need to feel part of a family and society. One way that I love my mother-in-law is by walking hand in hand with her in the corridor.
They need companionship. Nothing seems to cheer elderly people more than kids and animals. My cousin visits Alzheimer patients with her therapy dog. Although they don’t recognize their families, the patients often light up and become more relaxed when they pet her dog.
They need to be respected. I cringe when people treat older people like little kids. Even if their memory or health is gone, they are adults deserving respect.
What do caregivers have to deal with?
Time constraints. As people of the sandwich generation, we have many demands on our time. Usually one person assumes the role of primary caregiver, but the key is to not do it alone. Involve the whole family in the caregiving process. Allow others to be part of the solution. It values them and prevents burnout.
Self-care. Providing care increases stress levels in any family. Caregiving affects all aspects of life — our relationships, focus and work. We need to care for ourselves to stay well in the process of caring for someone else.
Financial challenges. Providing care costs money. Most of the elderly receive Social Security (91 percent), yet for many, income is limited and assistance needed. Besides facing our own issues of time, self-care and finances, caregivers need to make decisions for our aging parents about medical needs and housing arrangements, etc.
Medical issues. Research indicates that more than 12 million Americans with long-term care needs live in the community. Elder care often involves a wide range of health issues. The most common include mental-health ailments, such as Alzheimer’s or other related dementia, and physical ailments, such as hypertension, arthritis, heart disease, cancer, sinusitis and diabetes.
Housing issues. If our aging parents cannot stay in their own home, we basically have three choices. Most homelike is an independent-living facility — often tied to a senior center where one meal a day is shared with other residents. More care is provided in an assisted-living facility, which typically includes 24-hour supervision, housekeeping, meal preparation and assistance with the activities of daily living. A nursing facility is for those who need medical care and more.
How do we prepare?
Many of us will deal with elder care at some level. Preparing in advance for this possibility relieves stress when the time comes. We can learn key facts from books and Internet sites; collect necessary medical, financial and legal information; know our parents’ doctors, medications, insurance information, assets, Social Security numbers, neighbors, friends, etc. We can also make a list of people and agencies that can help when the time comes.
Preparation also requires us to assess our parents’ situation. We can periodically observe how things are going and evaluate their physical and mental health. In some cases it pays to hire a professional to provide a formal assessment.
The best time to prepare is before parents reach the stage where they need care. We need to honor our parents by including them in the decision making as much as possible. As caregivers, we need to be sensitive to our parents’ views. Unless they’re severely mentally incapacitated, as in my mother-in-law’s situation, parents should be a central part of all discussions, decisions and actions surrounding their care. Our parents are concerned about being a burden to us and dread losing control of their lives. Like most parents, ours felt better about having this kind of discussion when things were going well.
How can the church help?
As caregivers, we’re often overwhelmed and stressed. We need the church to love us, help us and provide prayer support. Here are a few practical things that spell love:
- Regularly visit an elderly person whose grown children and family live far away.
- Develop a care network to help with picking up groceries, running errands, doing yard work or housework, providing transportation, etc.
- Start a support group for caregivers.
- Provide a list of local agencies, resources and help options.
- Become aware of the caregivers’ needs. Offer to babysit so the caregivers can assist their parents.
- Provide spiritual support. Help caregivers talk to a parent about their faith.
What is our responsibility as Christians?
Regardless of our parents’ health condition and our relationship with them, God expects us to honor our father and mother. Even though my mother-in-law’s memory is gone, her soul remains intact. We will continue to love her and do all we can for her.
There are countless families in the same situation as I am. Each of you probably knows a family like ours. The question all of us should ask ourselves is, Am I ready to lend a hand and help carry the burden? |