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Eldercare, a form of caregiving is providing a senior with assistance. This may be physical, emotional or financial help of some sort. Eldercare might be in some direct form, such as help around the house, or from a distance with just daily phone call. People are living longer and staying healthier than ever. The population of seniors is growing. In the 2000 it is estimated that there will be more seniors that children in the U.S. Caregiving, Eldercare, senior care, "looking out for the folks" or whatever you wish to call it, is a growing trend. Caring for a person will be relative to the amount of care and attention they need and want and what you are able and willing to provide.If you are caring for a parent or plan to be, your responsibilities will be proportionate to what that person cannot do for himself or herself. At the same time, we find that family size has diminished over the last couple of generations. Where once a family had five, six or more children, that is no longer the case. Consequently, there are fewer family caregivers taking care of a growing population of seniors. It is therefore imperative that the caregiver, possibly yourself, become as well prepared for the task as possible. In the "old days", one of the siblings just took in Mama or Papa. It was just the thing to do and there was no thinking twice about it. Our society and culture have changed dramatically in just the last generation or two. Careers have moved us away and demands for our time have increased. Nonetheless, you've perhaps speculated that a time may come when Mom/Dad might need some help. You as the caregiver must first look after yourself. This includes your health and mental state as well as that of your family's. Caregiving can be a stressful job, both physically and emotionally. Mom/Dad, once independent people may have feelings of helplessness. They can become angry, despondent and confused. They may or may not acknowledge the help you are providing. You in turn may acquire feelings of helplessness and get angry or frustrated. You are not alone. Learn to seek out help. Do not allow family crises to occur. Assistance is available. The Older Americans Act of 1965was enacted to specifically deal with senior issues. There have been numerous amendments passed since then that address a wide variety of topics such as employment, legal services, transportation, social services, meals and health care. The Administration of Aging is the principal federal agency, which oversees these programs operated by state and local agencies. If you are presently and soon to be providing Eldercare contact the appropriate local agencies. There is no one single source or formula of answers. All families are unique, as are many of the problems they incur. Determine the resources available in your community and utilize them accordingly. Perhaps you don't know where to begin. What resources are available in your folks' community? Start here: Call the Eldercare Locator - 1 800 677-1116. You can find solutions. The answers will arrive in response to the questions that only you are uniquely qualified to ask.
Back to the Top Care provision implies that Mom/Dad are no longer capable of leading a completely independent life. Typically the parent will be suffering from Parkinson's disease, Alzheimer's disease, a traumatic brain injury, stroke or other "adult-onset" diseases and disorders. As the population of the U.S. ages there will be an ever-increasing number of parents receiving care in the home. You, your spouse and/or other family members or friends will provide this care. About half of all caregivers are spouses and about a third are adult children. Because of this growing trend there is more attention, research, education and support becoming available to caregivers. You are not alone in this situation. Home health care will occur when your parent has diminished capacities brought on by illness, disease or accident. Even those who have become seriously ill or perhaps even dying can be treated and cared for at home. There will be aid to be administered and likely the use of assistive devices such as walkers, wheelchairs, hospital beds, IV setups, oxygen and prostheses. There is help available. There are a number of agencies to turn to. If Mom/Dad have been discharged from a hospital first seek advice from the discharge planner. She/he will know the resources available in your community.
Home health care can be arranged by contacting you local office of the Area Agency on Aging - to locate call ELDERCARE @ 1800 677-1116. Agencies to be aware of are the local social service agencies and public health departments. Other organizations to check on are the United Way, Red Cross, Visiting Nurses Association as well as private home care agencies (Yellow Pages - Home Health Services).
I have the right . . .
This version of Caregivers Bill of Rights from Today's Caregiver Magazine Back to the Top The thought of providing care to a parent may seem peculiar to some. Your role as the "child" even into your adult life suggests that the parent was always able, able to care of you as you grew and able to care for themselves. The passage of time and the onset of age now places you in the role of providing care to one who can no longer care for themselves. If you are a parent then you know that caregiving can be a rewarding task but it can also be a difficult one. All caregivers at times experience feelings of frustration, stress, isolation, anguish, resentment and exhaustion. There is help available. If you are caring for a parent at home that is seriously ill, make certain to enlist home health care assistance. Check with the local Area Agency on Aging - Call Eldercare 1 800 677-1116. You can also refer to local social service agencies, private home care agencies, Visiting Nurses Associations, hospitals, public health departments and the United Way. Medicare and Medicaid cover some home health care services but these services are limited and must be prescribed by a physician. Some personal care services (i.e., non-skilled nursing) may be covered if it is in conjunction with skilled nursing services. Medicare and Medicaid will also cover some supplies and equipment (hospital bed, oxygen) if prescribed by a doctor. Check with the local Medicare office. Senior Centers (sometimes called Adult Day Care or Day Programs) may be an option in some circumstances. These day centers offer a variety of programs and services that can include meals, health assessment, recreational activities, nursing and therapies and transportation. This can be a good option for your parent and you. Check with the local Area Agency of Aging or contact groups such as senior centers, nursing homes, hospitals, civic and religious organizations. Usually there is a fee involved ($30/day on average). Often there are sliding scale payment programs and some are sponsored by various organizations. Sometimes Medicaid in some states will qualify individuals. Meals on Wheels can deliver nutritious meals to seniors to cannot cook or purchase groceries for themselves five or more times per week. Also be aware that congregate meals and companionship are available at senior centers and other sites in the community. These services are usually low-cost or free. Contact the National Meals on Wheels Foundation - 1 800 - 999-6262 or the Eldercare Locator 1 800 - 677-1116. Respite Care - can provide help with care giving so that families can take a "break" for an afternoon or a weekend. Medicare does not cover these programs. These programs are run by volunteers and are often subsidized by public agencies.
If you live a distance from Mom/Dad you can still be involved with their care and daily needs - albeit not in person. The folks do have their own friends. However the list of anyone's friends and contemporaries can grow shorter later in life. Sometimes older people have difficulties in getting out due to illness or perhaps transportation limitations. If circumstances are such that Mom/Dad are far away with little or no social contacts this can be worrisome. "Friendly Visitors" - are persons who make regular visits to homebound or ailing seniors. People such as this provide companionship in addition to other simple services such as reading, writing letters or just talking. Volunteers may be found through senior centers, local Area Agencies on Aging, churches as well as various city, health and youth service agencies. There are also private home health care agencies, which charge a fee. Also some public social service agencies provide this service for no charge no charge or on a sliding scale fee. Geriatric Care Managers - are professionals who provide a variety of services generally for families who live great distances from the folks. This is a relatively new field, as yet un-regulated, that is growing to meet demand. Home Observation - is practiced by most public workers such as utility company workers and postal carriers. These groups have been trained to identify and watch out for seniors. Check with the utility companies or the local Area Agency on Aging. Telephone Reassurance - can be provided by a service wherein phone contact is made every day between the senior and the service at a regular time or someone gets alerted. Even living at a great distance you can perform this type of function. It will give you peace of mind and assure Mom/Dad that they are important. E-Mail or Web TV - can provide daily contact with a sense of comfort and assurance. Notes written by grandchildren are especially welcomed and help maintain family connections and communications. Note: SeniorNet is a non-profit organization with 140 centers around the country where seniors can learn to operate computers and the Internet. Contact them at www.seniornet.org
There may be a time when it is best to consider a Nursing Home for Mom/Dad. They may be in a senior boarding facility or they may be getting care in your home. But they have become chronically ill or to frail and require more care than what they have been receiving. It is surprising to most that only a fraction of seniors go to nursing homes. Roughly 4-6% of people between the ages 65 and 85 will reside in these facilities. Yet as a person ages they do require more care. Approximately 20-25% of people over the age of 85 will receive care in a nursing home. Because women generally tend to live longer than men they will outnumber the boys by about three to one in these homes. Some families can provide care at home until the end of life. It really depends on the family, the condition of the parent, finances, outside support services and help from other relatives and friends. For some families this challenge can lead to stronger family ties and individual personal growth. For other families this is not the case. No one can be faulted. They have not failed or given up on Mom/Dad. It should be realized that only the daily physical tasks and chores have been relinquished in order that real love and giving may continue with refreshed emotion, advocacy, and care. The decision to move Dad/Mom to a nursing home should be based on sound and reasonable facts. Every individual and every family is unique. Thus there is no simple evaluation or "point" system from which a conclusion can be drawn. Every family will figure this out and make it's own determination.
It might help to define the positive advantages Mom/Dad would benefit from in a good nursing home. Examples are: better attention to medical needs, more activities, opportunities for socializing, planned events to name a few
Deciding to place Dad/Mom in a nursing home should be done with careful consideration, a great deal of thought and some discussion with close family and friends. Planning ahead can prevent crisis decision making which may result in other harder decisions and changes later and promulgate acrimony and hard feelings in the family. One of the first steps in planning would be to have a meeting. This allows all involved persons the opportunity to provide input and hear all of the relevant and personal issues. If possible have Mom/Dad involved as well. The Chapter on Housing reviews the Nursing Home and some processes for finding a suitable home. A nursing home may not be the right answer for everyone. Understand that care in a nursing facility can be a long-term proposition. It can be expensive and if a parents care needs change due to failing health or abilities the care demands will increase, as will the associated costs. Most nursing home residents go on Medicaid. You have paid into this system and this should be examined. Review the FIANCES Chapter and plan accordingly.
It may be helpful to prepare a Personal Assessment Profile on Mom/Dad (see below). This is something you can prepare (with Mom/Dad's help?) and it can be very useful for the nursing home staff.
The Planning The decision has been made. It has been determined that the nursing home is truly the best place for Mom/Dad. Transitioning to the new home should be made as comfortable as possible. After a good and suitable home has been found take Mom/Dad on a number of short visitations prior to moving into the home. This may help in the adjustment process with familiarity. Visit their room and bath. Ask them what information they want to find out about. Get them that information. Have open and honest discussions with him/her. "Mom/Dad - this is where you will be living." The Moving Day Each home is somewhat different. Talk with the administrator and get advice. Also find out the best time - day - mornings/afternoons - to make the actual transition. Determine with parent (if possible) which belongings are important to them, photos, documents, etc. and box and label. Bring them with along with Mom/Dad. You have also packed appropriate and essential items such as clothing and medication. Plan on staying a period of time - three to four hours or longer. Make certain that Mom/Dad have had time to acclimate to their new surroundings and acquire a level of comfort.
Plan on a relaxing, enjoyable activity for yourself once you leave. You have been through a strenuous and emotional ordeal. Take the "time out" - you're entitled.
Caregiving at the Nursing home Should the time come when Mom/Dad are residing in a home you will realize that you do not stop caring for them and neither will your caregiving. Your relationship may have entered a new phase but it does not have to be a negative one. There can be animosity on the part of the parent for being in a nursing home. This should not overshadow your love and concern. You and your family have made a thoughtful and practical decision. It is really up to you to make this into a positive experience. Be realistic with yourself and be patient. This is a big move for your parent and for you! It will take some time for "things to settle in". The average person takes about six months to adjust to a new home. With an older, debilitated person it may take even longer. Allow a period of time for Mom/Dad to become acquainted with their home and new friends Though Mom/Dad are in a nursing home they are still a part of your family. They can be allocated your time, thoughts, and concern as you would any other member of your family, a spouse or child. Plan frequency of visitations that are suited to your schedule balanced with the level of contact you feel Mom needs. Remember the nursing home staff is paid to do the mundane tasks such as cleaning and laundry. Your visits then will be like visiting a dear friend's home. You go there to share good companionship and feelings. Every visit can be a good time. Visits will mean a lot to your parent. They will enjoy news and stories of personal and family events. You may have more time now that Mom/Dad are being professionally cared for. Therefor your emotional level can be greater. Bring good energy and light humor. Every visit can be a happy time. Bring simple, meaningful gifts. Clothing items should be colorful yet easily washed - jogging suits are often recommended. Do not being valuables to a nursing home. Even in a good home where confused residents are allowed to wander around it is unrealistic to expect valuables can be protected. Pictures of family, especially grandchildren are highly treasured by the elderly. Every visit can be a giving time. Children can visit if they are comfortable with the environs. Children can brighten anyone's home and this is especially true in this case. Children can teach adults many meaningful things about life and children in turn learn important lessons in family bonding, caregiving and love. Every visit can be a family time.
Depending on Mom/Dad's functional and dietary limitations there may be opportunities for a meal or an ice cream excursion. Trips to a park, shopping or a hair appointment can be the highlight of the week or month. These outings may be limited by the physical capabilities of the parent.
If you have concerns about the treatment that Dad is receiving speak to the Director of Nursing or a senior staff person. Do not make judgements based on one incident or event. We all have bad days and this is true even in the best of homes.
Hospice is end of life care. With the onset of a terminal illness there are concerns and needs associated with dying. Hospice addresses these concerns and needs. You need not be alone if you are tending a dying parent. Hospice is help. This can be a very difficult time. You have a parent, Mom/Dad, who are terminally ill. It may be that after all medical options are exhausted they just want to go home. This is a good place to be. Hospice - Historically the term "hospice" meant a place of rest or shelter for sick or weary travelers. Today Webster's Dictionary also describes: "2. A facility or program designed to provide a caring environment for supplying the physical and emotional needs of the terminally ill." The modern version of hospice began in the 1960;s, creating a place for the terminally ill by combining pain relieve with compassionate care. This care is provided generally in the patients homes' although hospice can be provided in hospitals, nursing homes and other inpatient facilities.
Of these programs roughly eighty percent are certified to accept Medicare. Medicare spends over $2 billion a year of hospice, which comes under Medicare Part A (hospitalization). Most large companies offer hospice as part of their medical benefits. As well, many private insurance plans have a hospice benefit. Hospice is specialized care bringing comfort and support to patients and their families during the final stages of terminal illness. Professional hospice care is intended to provide a comprehensive assortment of medical and social services to assist the terminally ill and their families with the emotional, physical, psychological and spiritual anguish associated with dying. Hospice does not hasten death nor prolong life. Hospice is care - not a cure. Hospice care has become more popular in recent years. Part of the reason for this is economics. As managed health care continues to grow ways are sought to reduce expense. A person with a terminal illness may require many months of medical attention and pain control. In a hospital the costs can grow significantly. Hospice may not be suitable for everyone but for those who choose being at home with family it can be significantly better than a hospital. The mission of hospice care is to enable patients to manage their last days with dignity and distinction. When medicine and technology can no longer extend life, hospice seeks to provide quality to the remaining days. The goal of hospice is to keep the patient as pain free and alert as possible in the remaining days. Hospice does not engage means of artificial life-support systems nor surgical/medical heroics. Sometimes called "palliative" or comfort oriented care. hospice seeks to be all that is good in the final days of the patient and for the family. The "family" is those so deemed by the patient. Relatives, friends, life partners and anyone else who would be a part of the decision making and caregiving. Care for a patient is usually in the home, with family, rather than some other facility. The hospice group may include a physician, registered nurse, social worker, a spiritual advisor or counselor, a dietitian and respite volunteers to provide support to the patient and the family. Hospice does not provide 24 hour a day care but they are on call 24 hours a day. With hospice, death and its implications can be openly and honestly discussed with the patient and family members. This allows for those involved to deal with emotional issues and family or business matters in a calm and thoughtful process. This can be a time to settle any lingering broken family relations. It can be a time for reminiscing on happy family events. This can be a time for reflection. Dying is a part of life. Hospice professionals believe that by having family, including children, near the patient alleviates a great deal uncertainty and fear associated for the patient and the family. With thought and care this process can provide life affirming learning experiences. Hospice is not just for elderly persons. There are special hospice services for all that would like hospice care - even children. In addition to medical needs and pain control, hospice can may help with other chores including respite support, transportation and companionship.
If your parent is suffering from a terminal illness, hospice is something the family may consider. The alternative would be hospital or an acute nursing faciltiy. Hospice care will focus on the quality of the patient's life. This means pain control and counseling when appropriate. It is also any other necessities such as hospital beds, oxygen, medical equipment and so forth.
If your parent receives Medicare he/she is eligible for hospice care under Part A of Medicare. . Medicare covers many hospice services:
Physician services Medicare does not cover all of the costs for hospice service. The patient will have to pay a small fee for drugs (5% or $5, whichever is less) and a small fee for respite care although some hospice organizations do not charge for this. There are some things that Medicare does not cover, To qualify for hospice care under Medicare there are three criteria that must be met.
Medicare will pay covered costs for two 90-day periods or an unlimited number of 60- day periods provided the patient is re-certified as terminally ill at the beginning of each period.
Back to the Top Dying is a natural part of life. Caring for a loved one such as a parent at home can be difficult but there are rewards. Being there for Mom/Dad will demonstrate love and affection and well as provide them with a sense of worth and security. This caring process will be difficult yet it will reveal new strengths in yourself. The late stages of life can be significant and emotional in that it allows families to come together in special moments. Focus on giving loving care and attempt to make the patient as comfortable and secure as possible. This can be an overwhelming task. You have never anticipated performing this kind of task and you may feel ill prepared. Work with your hospice team. Talk to them about your concerns and your feelings. You will have support, guidance and understanding. Your role in these last days is caring for Mom/Dad. For Pain:
For Nausea:
For Breathing Problems:
For Confusion:
Remember that your hospice group is there to provide you with the support you will need. Talk with them, learn from them and share with them. Also share your feelings with family and friends. But remember death makes most people uncomfortable and it is understandable if some people "distance" themselves. Being prepared is important for the patient for the sake of comfort and ease. IBeing prepared is important for you emotionally. At some point the patient may go into a coma. What do you do? Do you try to awaken him/her? What would they want? While they are able, communicate with the patient about their ideas and wishes concerning life-prolonging measures. Generally, people in a coma should keep receiving pain medication. Discuss this with the hospice health care provider.
If there is a seizure, secure the patient. Lay them down. Turn the head to the side to allow breathing. Place pillows on both sides of the patient and/or pad any side rails on the bed. Talk to your hospice health care provider.
To locate a hospice program in your area contact:
The National Hospice Organization
The Cancer Information Service
You can also get information and references on local hospice groups through your health care provider, the local health department, hospital, social service agencies or spiritual advisors. If possible contact someone in your community who has recently been provided with hospice services. You can benefit from their experiences.
Healthy Living These organizations are representative of the sources of information on dietary, nutrition and exercise for seniors. They have good practical materials and publications available.
Alzheimer's Association
American Cancer Society
American Diabetes Association
American Dietetic Association
American Heart Association
Food and Drugs
Home Health Care Places to get help finding home health care.
Consumer Coalition for Quality Health Care
National Association for Home Care
National Aging Information Center
National Consumers League
National Institute on Adult Day Care - National Council on Aging
American Society on Aging
Assisted Living Federation of America Other Web Site Resources: The U.S. Administration on Aging - Department of Health and Human Services has an Index to Organizations with interests in Aging and Older Adults @ www.aoa.dhhs.gov/AOA/webres/orgindex.htm The National Aging Information Center - www.aoa.dhhs.gov/naic/ The Nutrition Navigator - has links for education, health professionals and those seeking info on nutrition and special dietary needs - www.navigator.tufts.edu Shape up America - has good general info on health, fitness, etc - www.shapeup.org Cyberdiet - has good assessments for health and nutrition - www.cyberdiet.com
Training for seniors on computers and the Internet @ www.seniornet.com
SPECIAL PETS/ ASSISTANCE PETS For useful information on senior care:
National Fraud Information Center
PERSONAL PROFILE
Name_______________________
Special Diet Y/N____________What?________________________________
Glasses Y/N________, Contacts Lens Y/N __________, Hearing Aid Y/N ________.
Problems and Limitations
Able to understand own needs? Y/N__________Can ask for help? Y/N_____________
Enjoys Individual Activities? Y/N _______ Describe __________________Hobbies______________ Assistance? Y/N ________Describe ___________________________________ Reading: Y/N____ Enjoys - (magazines, books, Bible) _________________________________ Television: Y/N _____ Which programs/times________________________ Radio: Y/N ________ Which programs/times _______________________ Assistance? Y/N_______ Describe__________________________________________ Exercise: Y/N_______ Prefers/Enjoys________________________________________________ Assistance? Y/N_________ Describe _________________________________________
Religious Preference________________________________
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