Considering the Best Care Options

 Where are WE? Where might we be going?

Introductory information to help you and your family get started and plan ahead.

Planning who will provide assistance and care involves several important considerations. Determining the best option(s) for where you or your loved one will get the care needed requires additional steps. But first, you must determine how current needs for help can be met. As needs for help with activities for daily living and nursing support change, decisions related to the best care for you and your loved one can be made more easily if planning has been started earlier.

Planning involves discussions about your love one's needs for care, support, and safety. It includes a look at the resources needed - the availability of family and friends to provide care at home, space, and facilities in a family member's home, and financial resources to pay for care and/or living accommodations. The availability of companion, housekeeping, home care and hospice agencies, as well as rehabilitation, assisted living and nursing home facilities in your community, provides the options from which you can choose. Descriptions of the various services and facilities and evaluation checklists that you can use when visiting facilities are often provided by state agencies. Community telephone referral agencies or "help lines" and "guides to services" (paper and online) help families find the best care options. Last and most importantly, planning must involve the desires and preferences of the person receiving care and the caregiver(s) responsible for providing it.

Some important goals to think about...

To consider the best care options, PLAN now.

• To identify needs requiring the help of others.
• To discuss the reality of providing care at home.
• To make a list of the "resources" - financial, time, energy, and expertise - to support the care needed.
• To find out about the different types of care residences. Determine the availability and quality of facilities in your community.
• To narrow the options for care -- matching needs, services, resources and facilities and
• To draft a plan with the best care options, updating it over time as needs and resources change, and additional care services and facilities become available.

 What will we need to get there? Taking an Inventory of Needs, Services and Resources ...

What do we need? What services and resources do we have available?

Checklists and ideas in this section are designed to assist you in identifying current and future needs as well as relevant personal and community resources.

• Identify needs requiring the help and care of others

  Think about needs related to your loved one's "head" - mental health, memory, thinking and behavior; "heart" - feelings, emotions, giving and receiving love, companionship; and "hands" - the help needed to take care of one's personal health, "activities of daily living," and the environment in which he or she lives. Planning often includes the assessment of mental and physical health needs by physicians, nurses, therapists and other medical experts.

  "Does Your Loved One Require Care?" ♥ is a checklist developed by Pennsylvania State University Gerontology Center. It includes sections on

  • Communication
  • Mental function
  • Mood
  • Behavior
  • Mobility
  • Medications
  • Meals
  • Alcohol use
  • Finances
  • Safety
  • Housekeeping
  • Social life
  • Transportation
  • Toileting
  • Bathing
  • Grooming
  • Dressing
  • Grocery shopping
  • Laundry
  • Telephone use

  Your loved one may be doing fine now, but be aware of warning signs that he or she needs additional support. Watch for:

  • Sudden weight loss suggesting problems getting, fixing or eating foods
  • Increased car accidents, dents suggesting poor vision, slowed reflexes
  • Burns, bruises or other injuries
  • Increasing forgetfulness - not paying bills, missing appointments, etc.
  • Other uncharacteristic behaviors...

  These and other signs are included in an excellent publication, "Loving Conversations," available from Easter Seals - www.easterseals.com. Once you get to this website, insert the words, loving conversations, in the search box and click on the search button to download or to order the booklet. This booklet includes basic descriptions and helpful checklists about

  • Staying at home
  • Moving in with family
  • Assisted living arrangements
  • Continuing care retirement communities
  • Skilled nursing facilities

Care at Home

Most people prefer to remain in the comfort of their own homes as they adapt their lives to changes in their health. Some people move into retirement communities or managed properties to reduce maintenance of their homes. Others with disabilities and/or limited incomes qualify to move into subsidized senior housing.

Fortunately, many spouses, partners, and families want to take care of the ones they love until it is no longer possible. With greater interests in care at home, many communities have experienced an increase in home care providers to assist in the care of the ill person and his or her residence.

Check out the following services now available in most communities:

• Adult Day Care - supervised activities, meals, medications, and socialization provided in a community center for elderly, frail and disabled adults who benefit from exercise, singing, and group activities while their caregivers are away from home - at work.
• Meal delivery to homes, senior centers and senior apartment residences for those who have limited abilities to buy and prepare nutritious meals.
• Transportation related to needs - specialized door-to-door bus and cab services, particularly helpful for transportation to and from doctor's appointments, therapy, testing, and shopping.
• Housekeeping or residential cleaning services that help families with strenuous and necessary chores on a routine basis. Occasionally, meal preparation and companion services are available from the same agencies that provide housekeeping services.
• Home maintenance, "handyman," and landscaping/lawn services often listed in local telephone directories, newspapers, or online such as www.delawareonline.com. Search the "Classifieds" - "Services" in the area of need.
• Home health aides trained to help with personal care and basic nursing care such as giving medications, changing bandages, etc.
• Home care nurses who make periodic health assessments, provide patient and family education about home care, administer intravenous fluids and medications, and give other specialized nursing care.
• Hospice care providers who deliver care to those facing advancing, incurable diseases - often within the last 6 months of their lives. Coordinated care is managed by nurses and social workers who work closely with the family and physician to insure the patient's physical and mental comfort.
• Geriatric care managers who take the lead in assessing home care needs, recommending important activities and community services, assisting in the development and coordination of a plan of care with the care receiver and caregiver(s). Many care (or case) managers are advanced practice nurses or social workers in private practices or with local agencies. Check out www.caremanager.org.
• Home physical, speech, respiratory and occupational therapy provided by aides and therapists.
• Home care medical supplies and equipment delivered and set up including - walkers, wheelchairs, beds, respiratory equipment, oxygen, raised toilet seats, commodes, and more. Needs for this equipment may be anticipated and ordered by hospital discharge planners, geriatric care managers, or by home care nurses and therapists.

Locate Available Home Care Services

Be realistic in planning for your loved one's care. Often home care supplies and the services of homemakers, home health aides, therapists, social workers, and nurses are available from the established home health care agencies in the community. Use the services that you need and can afford. Get help with locating community resources you need. Call "Caring Partners" for free, individualized planning at (302) 651-3401 and visit the Caregiver Resource Centers at the Wilmington or Newark Senior Centers. Please call ahead to make sure that the Coordinator is available to help you.

Check out the Web for local services:

• what services are provided
• when services are available
• the costs of the service
• any specific requirements to be met for services to be provided or covered by insurance
• whether there is a waiting list for the service.

Ask for a brochure and application if available. Do not forget to keep notes on the names of people who spoke to you. To purchase a copy of this excellent book, contact Legacy Health Services at (503) 413-6578.

Paying for Care

If you haven't already done so, now is a good time to figure out how you will pay for care. The Comfort of Home: An Illustrated Step-by-Step Guide for Caregivers ♥ by Meyer, M. M. (published in 1998 by CareTrust Publications LLC) includes an excellent chapter, "Paying for Care," that includes the following information for your consideration.

• Common ways to pay for care:
  • personal and family resources - current assets and income
  • public pay programs - Medicare, Medigap Supplemental Insurance, Medicaid, Department of Veterans Affairs Benefits, Older Americans Act and Social Services Block Grant
  • private pay long-term care insurance
  • community-based services - Meals-on-Wheels, senior centers, transportation, adult day care centers and others that may be reimbursed by government funding and provided by local volunteers.
• Take important steps early: Confirm eligibility and qualifications of your loved one for retirement benefits, insurance programs such as Medicare or Medicaid and community-based services.
• Be careful about purchasing second insurance policies such as Medigap or long-term insurance.
• Know what care is and is not covered under Medicare and Medicaid insurances.
• Find out about costs and coverage of care that may be needed in the future such as hospice care or long-term care in a care facility.
• Identify financial resources of your loved one - savings, income including social security benefits, investments, property, insurance, etc. - to pay for care.
• Consider tax benefits for health deductions. Can your loved one qualify as a dependent for tax purposes? What expenses are deductible?

 How will we do it? The Power of Pulling Together

What can we do to strengthen our caregiver-care receiver relationship and our "caring partnerships" with close friends, family members, and community agencies?

• Making decisions related to increased levels of care at home or in a care facility needs to involve the care receiver, caregivers, and supporting family members.

  In addition to identifying your loved one's increasing needs for physical care and emotional support and/or your time and abilities to provide the level and type of care required, you are faced with the question of "What can we do?" As you and your family seek possible solutions to answer this question, remember to involve your loved one as fully as possible. What does your partner or parent want to do?

  Sometimes it is best to start with putting yourself in your loved one's place. Consider the many personal losses experienced in illness (and/or aging), the distress in dealing with symptoms such as pain, shortness of breath, reduced muscle strength, or memory loss that make normal functioning and activities impossible, and their increasing dependency on others for life's basic needs. Think about the factors that limit friendships, recreation, travel, and involvement with work, social, and religious affiliations. So when independence and control are threatened further by the care decisions of others that separate them from their home, their possessions, and their family, friends, and pets, it is tough for everyone.

  Next ask your loved one about his or her priorities. Which things are most important, less important, or not important including...

  • Staying in own home
  • Staying in current community
  • Living near family
  • Living near friends
  • Living near place of worship
  • Access to social or recreational activities
  • Privacy
  • Security
  • Companionship
  • Keeping a pet
  • Accessibility to transportation
  • ... and other things known to be part of the person's life?

  Talk to your loved one in an understanding way about your concerns and fears about his or her health, safety, care and abilities to manage independently or with the type of help currently available. It is often best to present several reasonable options from which he or she can choose. Choices should be limited by affordability, and by the amount and kind of help that can be reasonably provided by family caregiver(s). Prevention of stress and burden on the family is very important in determining the options from which the care receiver can choose.

• Sharing information that has been or needs to be gathered is essential to making the best choices. This information should include anticipated care needs, your loved one's priorities and preferences, options for care at home, and care in the community setting. The availability, affordability, and the quality of care providers, programs, and services in your community and the financial resources available for paying for care need to be evaluated.
• Learning about Hospice Care (provided at home or within another setting) may help you understand its purpose and availability. The concept of hospice care is presented at www.hospicenet.org/html/concept.html . Hospice is a comprehensive type of care for families confronting life threatening illnesses. It focuses medical care on improving quality of life through expert symptom relief, coordination of care, and emotional and spiritual support based on "the patient's wishes and the family's needs." Specific information for caregivers is found at www.hospicenet.org/html/caregivers.html
• Determining the types of care facilities that may be needed now or in the future in your community is important to planning. Long term care options outside one's home include:

  Retirement Communities called "continuing care retirement communities" - CCRCs - that offer campus-like housing, independent living, and nursing services when needed. Multiple levels of care are available, allowing couples to live in the same community with each partner able to have varying levels of care. They remain in the community with the friends and activities they enjoy. Medical services and benefits are available with or without additional charges beyond the entrance fee and monthly charges. Legal and financial advice should be obtained before signing the lifelong contract. Generally people decide on this option when they are relatively healthy.

  Assisted Independent Living (sometimes called "congregate housing") is for people who need minimal help. Apartments or private rooms are designed with safety and security features, group social areas and dining rooms, shuttle transportation, and recreational and informational activities. Some communities offer rental units for low-income or disabled people who pay based on a percentage of their income. Waiting lists are common. As a person becomes more dependent and needs more assistance, he or she may have to relocate.

  As needs for personal care increase, options in your community may include Residential Care Facilities in which moderate levels of personal care, medication management, and meal, social and laundry services are available. Rooms are usually shared and criteria for admission often include mental alertness.

  Skilled Nursing Care Facilities - Nursing Homes - provide 24-hour per day care for people who need medically supervised care provided by licensed nurses. Often short-term post-hospital and rehabilitation care is ordered by the physician for people recovering from major disorders like stroke or hip fracture. Intermediate care is provided to those needing help with activities of daily living, some health services and limited nursing supervision. A lower level of care (custodial care) is often available for those who need some assistance with personal care and activities of daily living, but do not require nursing care. Special units for people with Alzheimer's disease are often located within nursing homes. Hospice care may also be provided within a nursing home setting. Limited Medicare and Medicaid coverage may be available for skilled and intermediate care in government-certified nursing homes.

  New models for care are designed to accommodate those who anticipate needs for multiple levels of care as they become older. These communities include independent living units with provisions for meal delivery, as needed, residential care units where personal care is available, and skilled nursing care units for residents requiring professional health care.

  The preceding information was gathered from several publications, Making a Decision about a Nursing Home ♥ and Living Arrangements in Later Life ♥ , published by the Oregon State University Extension Service, Agricultural Communications. Call (503) 754-2513 to order. More extensive information by Schmall, Cleland and Sturdevant (2000) is available in The Caregiver Helpbook: Powerful Tools for Caregiving ♥ as cited previously.

  Taking Care of Mom & Dad: Understanding Choices, Option and Services ♥ a CD-Rom for family caregivers, contact the Baltimore County Department of Aging at aginginfo@co.ba.md.us or call (410) 887-2594 for information about the CD. This program includes senior services ranging from independent living to hospice care including admission and eligibility requirements, costs, resources, regulations, legal documents, Alzheimer's and dementia care and more.
• Assessing the quality of care, services, and facilities in your community is critical to decision-making. Narrow your choices:

  Check out those services or facilities that match the needs and resources. Telephone, use online information, and /or visit service locations and facilities to ask questions and evaluate what they provide. Choosing a nursing home is an important decision, so you will want to find and compare nursing homes in your community carefully.

  "Delaware Cares About Your Well Being: How to Select Long Term Care" ♥ is a 2005 publication of the Long Term Care Ombudsman Program, Delaware Health and Social Services - call (800) 223-9074 to request a copy or to talk to a Director of the Ombudsman Program. The folder-type booklet contains a DVD and helpful information - a list of Delaware assisted living facilities, phone numbers, number of beds, cost range, types of services provided and payment sources, and a "Nursing Home Checklist" with questions you can use when you visit nursing homes.
  "Guide to Choosing a Nursing Home" by the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services is available on the web at www.medicare.gov (go to "Publications") or by calling (800)-633-4227. This is a comprehensive guide to choosing a nursing home - including a tear-out "Nursing Home Checklist", paying for care, and adjusting to a new home. Important state resources related to nursing home care are listed. The medicare.gov site provides a list of nursing homes in your community and how they compare (Select "Nursing Home Compare" once you are on the site.) Indicators of quality care are listed such as the percentage of residents with pressure sores, pain, infections or in physical restraints, so you can make comparisons between facilities.

  Don't forget to ask trusted friends, nurses, physicians, and clergy about homes in which they were satisfied with the care they witnessed or experienced.

  Narrowing choices of care settings and care providers to the best options involves matching needs, preferences, and financial "resources" to the highest quality care available. Once you have a list of available facilities and have identified those that provide the services needed and appear to be affordable, you will want to call the programs and care facilities to gather more information.

  • Are beds currently available? Is there a waiting list?
  • Is specialty care availability for your loved one's condition?
  • Are your loved one's religious beliefs, culture, and primary language supported within the care environment?
  • Are Medicare or Medicaid beds available (if you are using this coverage)?

  Keep track of the names and phone numbers of the people with whom you spoke, and guidelines that must be followed to use of facilities and services.

  Check out comparisons of the quality of care at the facilities you are considering at the Nursing Home Compare section of medicare.gov website, as describe above. If you wish to obtain a summary of the Delaware licensing survey of particular nursing homes, you can request them by calling the Division of Long Term Care Residents Protection at (302) 577-6661.

  Finally, visit your top choices with your loved one, if able. Tour the facilities and use one of the checklists discussed above to collect important information. Be aware of the atmosphere of the facility - Are residents and staff happy? Do staff members communicate with residents and family caregivers in helpful, friendly ways? What activities, programs and health care specialists are available? Is the facility clean?

  Remember to narrow the choices of care options based on the desires and preferences of the person who will be receiving care and the partner, son(s) or daughter(s) most directly involved with overseeing care.

• Draft a tentative plan that can be updated as needs, resources, and care options change. Organize the information collected during planning to save time later. When updated and new information is published, keep it for your reference.

 What can I do to preserve my health while caring for others?

This section provides information that may benefit your health by reducing caregiver strain, burden, morbidity and mortality.

Respite Care

An important addition to home care is respite care. Respite care gives caregivers a break from care responsibilities by having a person who can assist in the type of care required come to your home (or your loved one's home) to take over for a few hours or days. Respite care provides needed time away for recreation, shopping, appointments, a vacation, or even a nap. Respite care may be available as short stays in community or nursing care facilities. Personal care (bathing, dressing, grooming), household duties (light housekeeping, laundry and meal preparation) and companion services in the home or nursing home facility are often available and individualized for the needs of your parent or partner. In most cases, it is essential to reserve respite care far in advance of any planned extended time away from your care responsibilities.

When Caregivers Can't Do It All

Decisions to employ people to help your partner or parent with home responsibilities and health care may be the result of increasing dependence and medical needs related to advancing disease or aging. Independence is so valued that its loss brings sadness, anxiety, and a variety of losses from self-esteem to self-care. No wonder both care receivers and caregivers have a hard time talking about increasing support needed in the home care setting or relocating the care receiver to a new residence.

Spouses, partners, daughters and sons can easily overestimate their time, energy, and abilities to maintain and increase their caregiving responsibilities over time. Often, the time comes when an increasing number of care hours combine with requirements for more specialized nursing care. Caregiver's lives change, requiring adjustments in what they can provide. These changes often result in stress and a search for relief. Unfortunately, guilt may follow.

"Love is ordinarily associated with acts of nurturing, generosity, attentiveness, devotion, and care," begins an article written by Carolyn Haynali in Into the hands of strangers: Placing a loved one into a nursing home, originally published by caregiver.com. Carolyn poignantly describes the emotional hardships of placing her husband in a nursing home. Try thinking about nursing home placement as an act of love when care can no longer be given at home to relieve feelings of desertion, abandonment and guilt. The author discussed the pain of turning over her husband's care to others, grieving for the loss of her caregiver role. Carolyn described the burden of Alzheimer's caregiving, "the long goodbye," and then, the comfort of knowing he was in good facility where she was "simply redirecting", "not relinquishing," her loved one's care.

So the transitions in home and care are often very difficult for both care receiver and caregiver(s). For spouses, partners, sons and daughters, separation leads to loneliness and sadness for both caring partners. Life changes dramatically, particularly when caregiving has spanned months and years. Reconnecting with friends, perhaps moving back into employment, and renewing a focus on one's self, are important yet difficult, steps in your new life.

With the relief from the time-consuming tasks of caregiving, attention can be redirected to important responsibilities and enjoyable activities with your family and friends. When caregiving needs intensify for an ill or aging parent, the caregiver's spouse and children receive less time and attention. A ripple effect occurs as the caregiver's spouse has more time-consuming responsibilities and their children need to lean on their mom more than before. Time away from the family may lead to more stress for all and understanding may start to be replaced with resentment. Getting help with caregiving at home or in a care facility can take the strain off of the whole family by providing time for each other. Less demanding quality time with the ill loved one can be more meaningful for everyone.

Most importantly, relief from some of the duties of caregiving provides time to focus on you, the caregiver. Preventive healthcare and self-care usually do not get the attention needed during intensive caregiving. Caregivers delay in getting medical care and are less likely to stay in bed if they are sick. Important health habits are hard to achieve and maintain. Poor eating habits, failure to exercise, and sleep deprivation may create challenges to your physical health and emotional well being giving rise to the possible depletion of your resources, "burnout". So now is the time to rededicate your time and attention to your health and to your relationships with your family and friends. Get healthy!

Stay healthy! If you are reading this early in the course of caregiving, prevent the many risks of caregiving by setting limits on what you volunteer to do by communicating your needs and what you can and cannot do to your loved one and other family members. Share the care from the beginning and do not develop the "I can do it alone" or "I am the only one who can do it" attitudes. Make sure from the beginning that you and others do not suffer because you have promised others and yourself that you will take on too many of the caregiving responsibilities.

Remember the importance of getting help with your feelings from the time caregiving is anticipated to the time of major transitions (such as relocation of your loved one to a new care setting). Feelings of anger, guilt, sadness and anxiety are common and often can be controlled by talking with other people who are or have been in your situation. Some people benefit by caregiver or illness-associated support groups in the community (listed in the Delaware's most circulated newspaper, "The News-Journal," and community newspapers such as the "Newark Post"). Others prefer individual or family counseling to understand and cope with their feelings. If feelings of sadness, anxiety, and/or anger continue and affect your everyday life, you should seek professional help from a physician, clinical nurse specialist or practitioner, psychologist or social worker with a psychiatric specialty. An individualized combination of education, counseling, and medication may help you rebalance your feelings.

Remember the tips and suggestions offered in this module to help you preserve your body, mind and spirit.

• Involve your parent or partner in decisions related to providing for his or her health and safety needs.
• Support your loved one's independence within the limits of safety. Use care services that also support his or her highest potential for independence.
• Efficiently gather information about community resources and services available to assist with the variety of home care needs.
• Balance needs and "demands" with the "supply" of available services and facilities and the financial resources to pay for them.
• Share the work of identifying available, affordable and quality services and facilities. Share the findings with each other. Plan for future possibilities as a team. Take important steps to select services and facilities that provide a high quality of care
• Be positive and remember to focus on the benefits of utilizing family and community services as well as seeking professional help early when needed.
• Most importantly, plan and take time away from your caregiving responsibilities. Frequent short breaks and longer "vacations" are essential in preserving your health.