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The Michigan Long Term Care Companion
Chapter 3 Planning for Care
Life on earth is a temporary, yet precious, arrangement. As we grow older and watch our loved ones and ourselves age, we become even more aware of just how brief life really is. Yet, as our tomorrows slip into our yesterdays, far too many of us avoid talking about and planning for future care needs. For others, once well thought out plans must be changed because of the unexpected or unanticipated. Mrs. Titter was being well cared for, living largely independently next door to her son. As her physical condition deteriorated, discussions were held and plans made for her to move in with her daughter. When her cancer was diagnosed, those plans needed reevaluating. Most long term care is provided by family and friends. A wife caring for her husband who is disabled by a stroke. A mother caring for her disabled child. Adult children providing daily care to a parent. Some people don’t have families nearby. Others have no family at all. Sometimes, the family caregivers find the growing responsibilities too overwhelming and simply can’t continue. The wife caring for the disabled husband gets sick herself. The grandson who has been doing the shopping and house maintenance moves away. The daughter who has a husband, children and a full time job feels overwhelmed by the responsibilities. Families usually feel that they should provide the needed care. Some people remember a time when families, including grandparents, often shared the same home and took care of one another. Many older people took care of their parents and other family members. Some of them expect their children to do the same if the time comes when they need help. Others hold on to their independence dearly, even to the point of resisting greatly needed help or care. Every person’s and every family’s values, circumstances and expectations shapes how they respond to the need for help and care. Our love, respect, sense of duty and responsibility for our parents and other family members, as well as a desire to return the gift of care, can make caregiving very rewarding. Sometimes, however, these feelings cause guilt and conflict when caregiving problems set in. Good communication, honest and open discussions and realistic expectations all around are a must. As stressful and difficult as it may be, caring or managing care for a beloved spouse, parent, sibling or friend can be an enormously gratifying experience. Consider the profound truth in these observations by Virginia Morris in her thorough and sensitive book, How to Care for Aging Parents, 1996, Workman Publishing:
I have discovered that there is an aspect to caring for an aged parent, a vital aspect, that is not at all dreary. No matter what story is told, no matter how troubling the details, caring for an aged parent is about giving. It is about compassion, about family ties that we cannot turn our backs on, about a drive so basic, so powerful, that we cannot ignore it. It is also about closure and saying goodbye. Faced with the reality that life does, indeed, end, that this parent will one day be gone, our most human, most tender, most protective instincts rise to the surface. This response, this need to care, while brought on by heartbreaking circumstances, feels good. It reminds us of what’s really important in life and forces us to look beyond the routines of our daily lives. It comes from the heart, and so it can feed the heart. Investing in Understanding Taking the time to plan care and tend to personal feelings can help assure that good decisions are made and that family bonds are strengthened. Talking with loved ones about what to do when you or they can no longer care for themselves is difficult. It’s sad. It’s frightening. But, it’s important. Many people plan for their funeral, but avoid planning for their care if they become disabled! Planning for care involves more than making a reservation at a nursing home or deciding that you want to hire an in-home companion. It means sitting down with those you care about and involving them in your decisions. It means having a daughter-mother talk and asking her what she wants. It involves listening to what Dad wants rather than telling him what’s best for him. There are many considerations to think about. Health status and prognosis. Personal preferences about health care and treatments. Financial matters. The availability of family caregivers. Community resources. Lifestyle choices. Use the checklist at the end of this chapter to help identify some of the issues that may be important to you. If you have the luxury of planning in advance, do so. Even if you don’t need it now, a long term care plan is like an insurance policy – to be used if and when needed. Hopefully, you will never have to cash it in, but if you do, you’ll be more confident and able to make good choices. It is most difficult to make thoughtful decisions during a family health crisis, which is when most long term care decisions are made. The best laid plans of mice and men often go astray, wrote John Steinbeck in his novel Of Mice and Men. When planning for long term care, keep that and another axiom in mind: the truth changes. What was true yesterday will not always be true today, and tomorrow may bring yet a new truth. Remember also that few decisions in life are irreversible. As the truth changes, as the plans are put into place, as the uncontrollable and unanticipated happens, adjustments in your plans have to be made and, sometimes, decisions reconsidered. Flexibility and adaptability are key ingredients to a successful planning process. Reaching Out When You Need Care If you are the person needing care, consider how much your plans will help the people that love and care for you. By including them in the planning process, it gives your loved ones assurance that you trust them and enables them to truly understand your concerns, fears and desires. Knowing what you really want, your family can help make sure that your plans are fulfilled even if you become too ill to make decisions or express yourself. Just as important, their knowing what you don’t want can help avoid much pain and conflict somewhere down the road. If you don’t have immediate family, you might rely on trusted friends for help. In this situation, it is even more important to write down your care choices and instructions. Your friends will have no other binding way to speak for you. Also, tell any distant relatives and your doctor what your plans are and who you have appointed to represent you. This way, professional caretakers do not turn to others for decisions over those you have chosen. See chapter 4 for more information about giving care instructions to those you trust. You may face extremely tough choices. For everyone with whom you discuss these issues, there may be a different opinion. Tears are apt to fall. That’s okay, it hurts. Protests will probably be made. That’s okay, they love you. After your plans are made, some of the panic and sadness may give way to a sense of peace because you and your family have made decisions together. No matter how you approach this difficult process, there are only a few guarantees. It’s your life. It’s important. It’s your decision. Planning Checklist How is your health? If it is good and if you have no serious family health problems, it is less likely that you will need long term care soon. However, when you are or have been ill, or have a family history of health problems, the need for long term care is more likely. If this is the case, planning is in order now. Regardless of your health prospects, strongly consider establishing an advance directive. It is best to make sure that your desires are known by all involved and that someone you trust will be handling your affairs. Chapter 4 explains advance directives and describes options available to you. Is your family familiar with your health insurance coverage, your physicians, your health status and the medications you take? Who can and is willing to be involved in giving care? It is helpful to identify friends, neighbors, church members and family members who might be willing to help you in some way. If there is no one who can provide care, then you and your family will need to consider how to pay for long term care services and facilities. What services and facilities are in your area? Seek information on the services described in chapter 2. Who is willing to visit and monitor the care you receive? When care is provided in a long term care facility, it is important to have people visit often to make sure you are treated well. Will your family, friends or church members be willing and able to visit? What are your preferences? Where would you like to live if daily care is needed? What is most important to your quality of life? What financial resources are available to you? Very little long term care is covered by private insurance or Medicare. Your own resources may be needed to pay for care unless you are eligible for government programs such as Medicaid. You may wish to consider estate planning with an attorney who is a member of the National Academy of Elder Law Attorneys, 1604 N. Country Club Road, Tucson, AZ 85716, (520) 881-4005. Or contact them at their website at www.naela.com. for information on selecting an elder law attorney. Do your helpers know where your financial accounts are and who is authorized to withdraw funds? What do you want to happen if you are unable to make decisions? Consider who you want involved in making decisions and boundaries you want set for medical treatment. Return to Michigan Long Term Care Companion - Table of Contents Order your own copy of The Michigan Long Term Care Companion! Copyright © 1998 by Citizens for Better Care. All rights reserved. No portion of this book may be reproduced in any form or stored in a retrieval system without permission in writing from the publisher, except short passages for review in print or electronic media. ISBN 1-880697-05-X |
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Long
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