HOW TO USE THIS WEBSITE
When you click on the Family Resource Guide, you will find educational material on the topics needed to organize your personal information, which are separated into sections.
Please note that at the end of each section there is a link to the data pages that match that section, which are used to record your personal information. These data pages are also available in the Resources section. These can be downloaded and printed for your use.
The following information is offered to give you a “mini-education” on issues that will affect us all as we age. Many of you are already dealing with these issues with aging parents, or you may be one of the “baby boomers” who are facing these issues in the near future.
We need to become informed and knowledgeable consumers. With the decrease of close inter-generational relationships, the “adult-child generation” has had little training about care-giving issues. Frequently, life-style changes occur on an emergency basis, often caused by a fall of an elder resulting in broken bones. With the advent of “Managed Care” in our health care system, discharge planners at hospitals are now reporting that they are being notified to begin the care plan for a patient’s release at the time a patient is admitted! The length of hospitalization has dropped dramatically over the years, and patients are discharged to care facilities sooner. The family is asked to make post-hospitalization care plans before they have even adjusted to the current emergency. It is therefore imperative that families discuss options and make contingency plans.
In addition, Medicare will ONLY offer limited benefits at a Skilled Nursing Facility (SNF) if the patient has been hospitalized for 3 days prior to the SNF admission. As Medicare must authorize and pay for those hospital stays, it is in their best interest to discharge the patient as soon as possible!
Health care is in a state of flux. Choosing the RIGHT place for a loved one, when they can no longer live independently, is a very stressful decision. The following is a brief overview of licensed facilities that provide care:
• Assisted Living or Residential Care is either a care option or an entire facility which offers a private room, board, social activities, and monitoring of medication for residents who can no longer live at home, but who do not require the services of a skilled nursing facility. Smaller homes may be referred to as Board and Care Homes.
• A skilled nursing facility (SNF) provides residents with professional nursing care on a 24-hour basis as ordered by the physician. Physical, occupational, and other therapies may be provided.
• Specialized facilities for the “memory impaired” are often part of larger care communities or are stand alone facilities.
Confusion may exist between care facilities and senior housing. Again, there are several classifications and they may have different titles, depending upon the area where you live.
• “Planned Adult Communities” are usually for active, younger seniors who purchase their residence. Recreational facilities are usually available but no medical services are offered.
• “Independent Retirement Living” facilities are apartments or studio accommodations, which are usually rented. Residents are expected to be in good health and ambulatory. No medical services are available, but recreational activities, meal plans, and transportation are offered.
• “Continuing Care” and “Life Care” facilities both require a one-time entry fee and a monthly fee, but medical services are available. They usually offer independent living, assisted living and skill nursing facilities on site. In Life Care facilities the monthly rate remains the same as the resident requires more services and moves through the continuum of care. In Continuing Care facilities, monthly fees increase if residents require assisted living or skilled nursing services. The Life Care entry fee is usually substantially larger than the one for a Continuing Care facility. Some are affiliated with medical facilities, and offer lifetime health care benefits.
NOTE: There is a relatively new business model that has grown out of the need to find appropriate housing options for seniors, called “Senior Referral Services.” These are sometimes called Senior Housing Registries, Placement Agencies, etc. The staff members are knowledgeable about the various senior communities in your area, and what is appropriate for the individual senior. They will guide the family through the confusing maze of options, and accompany the client to the care communities, to find the best fit for all. They are paid by the community, not by the senior nor the family. If you cannot locate someone in your city, contact several of the larger local senior communities and ask their marketing director for a referral.
An option for end of life care is “Hospice,” a rapidly growing part of the medical community. The National Hospice and Palliative Care Organization can be reached at: 1901 North Monroe Street, Suite 901, Arlington, VA 22209. Hospice care neither shortens nor lengthens life. It provides care and support for the patient and entire family through the dying process and bereavement period following a death. Hospice accepts patients into its program who have an estimated six-month life expectancy. In order to qualify the hospice, the patient must have decided not to seek medical intervention, but rather to allow the disease course to continue naturally.
Most hospice care is given in the home, as few organizations have in-patient facilities. Many hospice organizations are also serving in the assisted living or skilled nursing home setting. A primary care giver is designated and can be a family member or a paid employee. In the facility, the staff plays that role. Hospice provides total case management, with the goal of highest quality of life attainable within the dying process. The services include registered nurses (with special training in pain management techniques), social workers, home health aid visits, pastoral care, and volunteers who give respite for the care givers in the home setting. Hospice personnel can answer any questions you have about levels of care offered and length of individual visits. Some hospices have alliances with home health care agencies to provide attendant/custodial care. Home health care is rarely covered by insurance. Check long-term care plans carefully to see if they cover this service.
Hospice accepts patients of any age. When the provider is a Medicare approved hospice, and the patient is receiving Medicare benefits, there is a hospice benefit that may be available to cover these expenses. As guidelines change frequently, please check with your local Medicare approved hospice for exact details.
Should you prefer not to consider a hospice program, or none is available in your area, private agencies are a valuable source of help. Home health care is a rapidly growing field. An agency can provide case management services, including a team of nurses, social workers, home health aids, and others. They charge an hourly rate, and if a lot of hours are required, the monthly care bill must be considered.
Another option is private hire, 24-hour live-in help. Some agencies have personnel available for private hire, and you are charged an agency fee for locating and screening this person. Sometimes it's well worth it! I know of one family who reduced their monthly care bill by $5,000.00!
When you do a private hire, you are responsible for filing the paperwork for employee with the IRS, Social Security, obtaining Unemployment Insurance, etc. If this sounds too complicated, an accountant or knowledgeable payroll service can assist you with this aspect of care. Also, check with your insurance company regarding your liability insurance coverage, to see if it covers injuries to employees in your home.
Another resource is the “Professional Geriatric Care Manager.” These care managers can evaluate and coordinate the type of assistance an elder may need to safely remain in their current living situation, and they have the expertise to make suggestions for finding appropriate facilities to meet the elder’s needs. Aging Life Care Association can be contacted at 1-520-881-8008.
Payment options for services are confusing, not only for the adult child, but for the seniors themselves. Request a copy of the current Medicare Handbook from Medicare/Social Security. You will be amazed at how little in facility care is covered by Medicare.
Your geriatric care manager, nurse, home health aid, and social worker are wonderful resources for helping find the right practical aids to facilitate home health care. Occupational therapists and physical therapists are also good consultants.
Hospital beds can be rented, which move vertically to ease the back strain of the caregiver! Special mattresses are now available that can help prevent pressure sores. Check with your physician, as insurance may help cover this expense. A detailed prescription may be required, prior to the purchase or rental of durable medical equipment! And believe it or not, some places rent hospital beds and charge extra for the bed rails. It's somewhat like renting a car and paying extra for the doors! If Medicare reimbursement is involved, check with the supplier to see if they are a Medicare Approved Provider, and if the model of the product you desire is covered.
Walkers, wheel chairs, commode chairs, canes, tub seats, and other equipment may also be covered by your insurance, and again may required a detailed prescription prior to purchase. These can sometimes be borrowed from an equipment loaner closet. Check with organizations such as your community senior center, American Red Cross, Cancer Society, or M.S. Society. Some mobile home parks even have loaner closets of durable medical equipment.
Unique aids are available to ease home care. Hand held shower attachments, shampoos which don't require rinsing or shampoo trays which empty into a wastebasket, special bed trays, large disposable aprons, and other helpful items are on the market. Numerous utensils and appliances have been developed for the physically challenged (such as one handed knives, elastic shoe laces) and can be ordered by mail.
The following is a sample list of resources and/or companies who offer these creative products:
• Independent Living Aids 800.537.2118 www.independentliving.com
• Maxiaids 800.522.6294, www.maxiaids.com
In most areas, support groups are now available to address the needs of those who are dying, and their family members, children, and care-givers. They also provide ongoing bereavement support. A support group will not be able to heal the wound, but there is comfort just being with others who are going through similar experiences. This gives us the ability to share, encourage, and support one another – and thereby ease the pain.
If you need information and resources for someone living in another area of the United States, call the Eldercare Locator: 1-800-677-1116. Have available the person's county, zip code or city, to help them determine the nearest information and assistance source in their community. They will give you the phone number in that area to contact, to request referral information and a catalogue of services available. This is a wonderful resource when trying to do long-distance care giving. Also check with your local Council on Aging, to find services available in your area.
Be certain to list all the physicians and their specialty, such as primary care, specialists, chiropractors, and other health care professionals.
Include all pharmacies you use. If a patient uses more than one pharmacy and has more than one physician prescribing medications, no one may have the complete medication picture for their patient. Pharmacists can be your first line of defense in avoiding medication overdoses and interactions. You are encouraged to use only one pharmacy, so that the pharmacist has knowledge of all the medications you are using. And create a separate list of medications for each person. Date the list and keep it up to date.
All allergies should be recorded, with all related allergens included. For example: Latex allergy includes sensitivity not only to latex gloves, balloons, rubber bands and car tires but also to bananas, kiwi, pineapple, avocado, mangos, water chestnuts, nectarines, peaches, etc. Always carry your allergy medication and wear a medical alert bracelet or necklace if you have a serious allergy – it may save your life!