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Help For The Caregiver It's a typical scenario: You start by caring for your parent, spouse, or sibling an hour here, an hour there. But once your loved one's Alzheimer's disease has progressed beyond the initial stages, that's no longer possible. Pretty soon, you are devoting full-time to watching over your patient. Presto - you've become an around-the-clock caregiver! Most often, the progress of Alzheimer's disease requires significant changes to the family's schedule and commitments. A caregiver trying to do most of the work alone will soon find it an impossible task. Even with several caregivers taking turns, it's not uncommon for everyone to feel frustrated, depressed, and despairing. Generally, when these feelings get out of hand, it means that something ought to be done to make care a more manageable process for all concerned. The emotional stress of watching your loved one go downhill cannot be overestimated. Do not be ashamed or embarrassed to seek relief. Even the physical demands can be exhausting. Lifting, bathing, dressing, toileting, and feeding your loved one must be performed carefully in order to prevent injuries to both your loved one and yourself. However, when you get pressed for time, trying to care for your loved one and your household, being careful could easily become the last thing on your mind. Sooner or later, caregivers realize they need help. But where do you look? To get started, it is suggested that you make contact with a social worker connected to your local hospital, county or state agency on aging, or local religious or charitable organizations. You can find these in your yellow pages under "social services" or "human services." Another route to pursue is your local department of health. These agencies can help you with financial advice, assistance with tax or Medicare forms, locating special-needs housing, and services that provide transportation and meals. What are the sources of information about available services? The Eldercare Locator is a nation-wide service to help families and friends find information about community services for older people. The Eldercare Locator gives you access to an extensive network of organizations serving older people at state and local community levels. The Eldercare Locator can connect you to information sources for a variety of services including:
The Eldercare Locator is a resource to help you find these community services for seniors through a national toll-free number (l-800-677-1116). Occasional Needs If you already spend most of your time at home, you may wish to have someone step-in so you can run errands - or simply take a much needed rest. In many areas, volunteers organized by religious, local government, or community groups will step-in for a few hours. Adult day-care programs offering personal care, meals, recreational activities, and some therapies should be available for short and long periods. Not all of these are expensive - often churches, synagogues, YMCAs, and hospitals run such programs on a sliding scale, based on your ability to pay. You may even find one that's free! Part- and Full-Time Help If you need more than occasional help, you may want to look into hiring a health care aide to come to your home on a regular basis. These aides can bathe, dress, and feed the patient, administer medications, and even shop, cook, and do light housework. Aides can be hired directly or through an agency. The advantages of hiring one yourself are that you have greater control over who you choose - you do the interviewing, screening, and you pay them directly (no add-on fee from an agency). The biggest disadvantage is that, if the person doesn't work out or fails to show up one day, you're stuck with no help. Home health agencies spare you the search and much of the hassle. They're also equipped to send you a replacement aide immediately. In the later stages of the patient's Alzheimer's, you might consider a hospice program, which can take place in your home or in a nursing facility. Hospice programs are designed primarily to manage (ease) the patient's pain and to help patient and caregiver cope with impending death. Home hospice care can be given by a visiting nurse, social worker, home health aide, clergy, and volunteers. Durable medical equipment like hospital beds, medical supplies such as incontinent pads, and medications are also covered in such a plan. The National Hospice Helpline at l-800-658-8898 can give you information on hospice locations in your area. Institutional care ranges from residence centers for ambulatory patients who need only limited assistance to nursing homes for bed-bound patients with continual needs. Your agency on aging should have a list of licensed facilities. It is recommended that you visit several facilities to see how staff interacts with patients. You may want to make a point of coming during visiting hours so you can talk to residents and their family members and see how they like the facility. (Another suggestion: If you like what you see during the day, come back one night to see if the night staffing is adequate to meet the needs of all patients.) Help for You The person most often overlooked in the caring process is the caregiver. It is critical not to neglect your own needs. You'll be a less effective caregiver in the long run if you cannot admit your own limitations and play to your strengths. Here are a few tips:
Resources for the Caregiver Wendy Lustbader has produced a video (60 minutes) on caregiving entitled: A Prescription for Caregivers. Filmed in front of a live audience of caregivers, this presentation is packed with humor and stories from real life. Topics include: heeding resentment as a warning sign of doing too much, the many varieties of guilt options for self-care, and figuring out how much care is "enough." Both caregivers and professionals who assist them will find ideas on how to make life better for the giver and receiver of care. The video normally sells for $30.00, but Ms. Lustbader is giving our readers a special price of $20.00. She is also the author of two books: Taking Care of Aging Family Members ($16.00) and Counting on Kindness ($14.00). To order these resources, add $3.00 for shipping/handling and mail to: Wendy Lustbader |