Our culture tells us that we should fight hard against age, illness and death: “Do not go gentle into that good night,” the Dylan Thomas poem says. “Rage, rage against the dying of the light.” And holding on to life, to our loved ones, is indeed a basic human instinct. However, as the end of life approaches, “raging against the dying of the light” often begins to lose importance, and “letting go” may instead feel like the right thing to do.

This Fact Sheet discusses the shifting emotions and considerations involved in “holding on” or “letting go.” Addressing these sensitive issues ahead of time will allow a person with a chronic illness to have some choice or control over his or her care, help families with the process of making difficult decisions, and may make this profound transition a little easier for everyone concerned.

The opinions of the dying person are important, and it is often impossible to know what those beliefs are unless we discuss the issues ahead of time. Planning ahead gives the caregiver and loved ones choices in care and is kinder to the person who will have to make decisions. First, this Fact Sheet will present the principal concerns. Then it will discuss planning ahead, and some of the related matters that come up during chronic illness. Finally, it will present some ideas on actually making the decisions when the time has come.

Holding On

As people, we have an instinctive desire to go on living. We experience this as desires for food, activity, learning, etc. We also feel attachments to loved ones, such as family members and friends, and even to pets, and we do not want to leave them. We do not so much decide to go on living, as find ourselves doing it automatically. Robert Frost said once, “In three words I can sum up everything I have learned about life: It goes on.” Even in difficult times, it is our nature to hold on for better times.

When we realize that the end of life may be approaching, other thoughts and feelings arise. The person who is ill will want to be with loved ones, and may also feel a sense of responsibility towards them, not wanting to fail them nor cause them grief. He/she may have unfinished business. For example, the person may want to reconcile with estranged family members or friends and will find it both easier and more important to do. Fears arise, and may be so strong that they are hard to think about or even admit: fear of change, of the dying process, of what happens after death, of losing control, of dependency and so on. Both the person who is ill and the caregiver might also experience resentment, sadness and anger at having to do what neither wants to do, namely face death and dying.

In one way or another, hope remains. The object of hope may change. As death comes closer, the family may hope for a restful night, or another visit with a particular friend, or just a quiet passing from this life to whatever we hope follows it. Often, as the end of life nears, we keep two incompatible ideas in our minds at the same time. The Jewish prayer of the gravely ill puts it well for both the person who is ill and the loved ones caring for him/her: “I do not choose to die. May it come to pass that I may be healed. But if death is my fate, then I accept it with dignity.”

Letting Go

As death nears, most people feel a lessening of their desire to live longer. This is not a matter of depression. Instead, they sense it is time to let go, perhaps as in other times in life when one senses it is time for a major change. Examples might be leaving home, getting married, divorcing or changing jobs. Some people describe a sense of profound tiredness, of a tiredness that no longer goes away with rest. Others, who may have overcome many adversities in their lives, reach a point where they feel they have struggled as much as they have been called upon to do and will struggle no more. Refusing to let go can prolong dying, but it cannot prevent it. Dying, thus prolonged, can become more a time of suffering than of living.

Family members and friends who love the dying person may experience a similar change. At first, one refuses to admit the possibility of a loved one dying. Then one refuses to accept the death happening. Lastly, one may see that dying is the better of two bad choices, and be ready to give the loved one permission to die. As mentioned, the dying are distressed at causing grief for those who love them, and, receiving permission to die can relieve their distress. There is a time for this to happen. Before that, it feels wrong to accept a loss, but after that it can be an act of great kindness to say, “You may go when you feel it is time. I will be okay.”

Other Concerns

Letting go gets mixed up in our minds with a person wanting to die, although these are really separate situations. There are various reasons a person may want to die, reasons quite separate from those for letting go. Depression is one response to finding life too painful in some way. Some people cannot tolerate losing control, so they want to take control of dying. It can be unpleasant to be disabled, or in a place one does not want to be, or isolated from the important people and things in one’s life. Very often, a severely ill person feels like a burden to family and friends, and may wish to die rather than let this continue. Fears of the future, even of dying, may be so great that a person wants to die to get away from that future. Inadequately controlled pain or other symptoms can make life seem unbearable. For many of these problems the right sort of help can make a great improvement, and replace the desire to die with a willingness to live out this last part of one’s life.

Chronic Illness

So far, this Fact Sheet has been about the very end of life. Many, or even most, people go through a period of chronic illness before they die. Along the way there are numerous choices to make. Caregivers and people they care for have to decide whether or not to get a particular treatment or procedure. How long can one keep trying to do usual activities, including work, and when must they admit that that phase of their lives is over? Most of us have things we have dreamed of doing, but never got around to. Now may be the time to do that thing, no matter how difficult, or it may be time to let it be just a beautiful dream. Chronic illness brings up one situation after another where caregivers and care receivers must decide either to hold on or to let go.

Planning Ahead

Planning ahead means thinking about what is important, and what is not. It also means talking about this with those close to us. Even though we think we know what someone else thinks and believes, we really do not know until we ask. You cannot read other people’s minds.

When we think about the last part of our own or someone else’s life, consider these questions: What makes life worth living? What would make it definitely not worth living? What might at first seem like too much to put up with, but then might seem manageable after getting used to the situation and learning how to deal with it? If I knew life was coming to an end, what would be comforting and make dying feel safe? What, in that situation, would I most want to avoid? Some matters to consider would be: being able to talk with people, activity, physical comfort, alertness, the burden of care on others, being at home (or not being there), how much distress it would be worth in order to live another month, what medical procedures are not worth enduring, what I think is the best way for a person to die, how important it is to be in control of how one lives and how one dies, whose opinion should be sought in making choices about end of life care. One especially important matter is to complete the Advance Health Care Directive for both the person who is ill and the caregiver, so that there is an official spokesperson when one is too sick or too confused to speak for him/herself.

If, as caregivers, we haven’t had the necessary conversations—whether due to reluctance, dementia, or a crisis—we might have to think about the issues raised above without a lot of information. Some questions that might help in thinking about this are: What has that person actually told me? How can I find out for sure about her or his wishes? Turning now to myself as the caregiver, what would be important to me? What would I especially like to know about that person’s wishes? What would be the limits of what I could do? Could I take time off work? How much? What physical limitations do I have? What kinds of care would be just too much emotionally for me? Am I willing to accept the responsibility of being someone’s official spokesperson? If that person has relatives who would be especially difficult to deal with, how would I manage being the official maker of decisions?

All of these questions may sound very difficult to discuss now, when the time for decisions is still in the future. However, they are harder to discuss when someone is really sick, emotions are high, and decisions must be made quickly. Dementia soon takes away the ability to discuss complicated issues. The earlier everyone sits down to talk, the better. The best way to start is simply to start. Arrange a time to talk. Someone else’s death or illness may offer a good opportunity to bring up thoughts you had about their choices. Perhaps you could say you want to talk about things that might happen in the future, in case of serious illness. Have some ideas to bring up. Be prepared to listen a lot, and to ask questions. Do your best not to criticize what the other person says. If you know the other person will not want to talk much about this topic, have just one or two important things to say or to ask about. Be prepared to break off the conversation, and to come back to it another time. Write down the important things people say. Eventually, you can use your notes to prepare a statement of wishes and make this statement part of an “advance directive” about health care decisions, whether or not the formal document has been completed.

Making the Decision

Is it time to let go? Or time to give a loved one permission to die? There are three ways to help decide. First, look at the medical situation. Has the illness really reached its final stages? When it has, the body is usually moving on its own toward dying, with strength declining, appetite poor, and often the mind becoming sleepier and more confused. Treatments are no longer working as well as before, and everyday activities are becoming more and more burdensome. In a sense, life is disappearing. Second, talk with people you trust. Discuss the situation with the family members and friends who seem to be able to see things as they are. You might also talk with people who are not personally involved. Choose the people whose judgment you trust, not just those with an official role of giving advice. Most importantly, what does the dying person think? Third, listen to your heart. Try to see beyond your fears and wishes, to what love and caring are saying to you. What is really best for the one who is dying, and for the others around? Given that death is unavoidable, what is the kindest thing to do? It might be holding on. It might be letting go.

Credits

• Albom, Mitch, Tuesdays with Morrie, Doubleday, 1997.
• Byock, Ira, Dying Well, Riverhead Books, 1997.
• Dying Unafraid
  Fran Johns
  Synergistic Press
  3965 Sacramento Street
  San Francisco, CA 94118
  (415) 387-8180
  www.synergisticbooks.com
• Kubler Ross, Elisabeth, Death, The Final Stage of Growth, Prentice Hall, Inc, 1975.
• Levine, Stephen, Who Dies, Anchor Books, 1982.
• Handbook for Mortals
  Joanne Lynn, MD and Joan Harrold, MD
  Americans for Better Care of the Dying
  4200 Wisconsin Ave. NW, Suite 418
  Washington DC, 20016
  (202) 895-2660
  www.abcd-caring.org
• Malcolm, Andrew, This Far and No More, Times Books, 1987.
• Nulland, Sherwin, How We Die, Alfred A. Knopf, 1994.
• Rabbi Nosson Scherman, The Complete Art Scroll Siddur, Mesorah Publications, 2000.
• Shannon, Thomas and Charles Faso, Let Them Go Free, Sheed and Word, 1987.
• Thomas, Dylan, “Do Not Go Gentle Into that Good Night”, The Collected Poems of Dylan Thomas, New Directions, 1957.
• Webb, Marilyn, The Good Death, Bantam Books, 1997.

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, head injury, Parkinson’s and other debilitating disorders that strike adults.

Compassion & Choices
PO Box 101810
Denver, CO 80250-1810
(800) 247-7421
www.compassionindying.org

Hospice Foundation of America
2001 S St. NW, #300
Washington DC, 20009
(800) 854-3402
www.hospicefoundation.org

National Hospice Foundation
(800) 338-8619
www.hospiceinfo.org

National Hospice and Palliative Care Organization
A Pathway for Patients and Families Facing Terminal Disease
1700 Diagonal Rd. Suite 625
Alexandria, VA 22314
(703) 837-1500
www.nhpco.org

Finding Your Way and Talking it Over
Sacramento Health Care Decisions
10540 White Rock Rd, Suite 135
Rancho Cordova, CA 95670
(916) 851-2828
www.sachealthdecisions.org

Five Wishes
Aging with Dignity
PO Box 1661
Tallahassee, FL 32302
(888) 5-WISHES
www.agingwithdignity.org/5wishes.html

Five Wishes is a document that helps you express how you want to be treated in the event you become seriously ill and unable to speak for yourself.

Prepared by Family Caregiver Alliance. Reviewed by John Neville, MD, Spiritual Care Coordinator, Pathways Hospice. Funding provided by the Older Americans Act, administered by the San Francisco Office on the Aging. ©2003 All Rights Reserved.

Assessing Your Home-Care Needs

A number of options are available for finding help at home. It is often best to start by assessing both your needs as a caregiver and the needs of the person you are caring for. There are a variety of checklists to help you evaluate what types of help are needed. In general, consider the following areas:

• Personal Care: bathing, eating, dressing, toileting
• Household Care: cooking, cleaning, laundry, shopping
• Health Care: medication management, physician’s appointments, physical therapy
• Emotional Care: companionship, meaningful activities, conversation

It is also important to evaluate the values and preferences of the person receiving care. He or she may be more comfortable with a home care worker who shares his or her cultural background and/or language. The care recipient may also have a preference between male and female caregivers, particularly if the worker will be helping with personal care. (For more information, see the FCA Fact Sheet Making Choices About Everyday Care.)

This assessment may also enable you to include alternative (and possibly less expensive) approaches to care such as adult day care, friendly visiting services, home grocery delivery, pharmacy delivery services and meals-on-wheels programs. (For more information on these and other services, see the FCA Fact Sheet Community Care Options.)

Writing a Job Description

Once you have identified the types of help you need, writing a job description can be fairly straightforward. In addition to including the tasks you have identified from your assessment, be sure to include the following when and if appropriate:

• Health care training (what level and what type – CNA, LVN, RN)
• Driving (car needed or only valid driver’s license)
• Ability to lift care recipient and/or operate special equipment
• Experience with people with memory impairments and/or other disabilities
• Language skills
• Any other special skills needed

At this point, you have the option of hiring an individual or going through a home care or home health care agency. In some states, publicly- funded programs may allow you to hire another family member to assist you in providing care at home. In making that decision, consider the following:

Developing a Job Contract

The job contract is based upon the job description. It formalizes the agreement between you, the employer, and the employee, and is signed by both of you. Should questions or problems come up later, either party can refer to the written agreement. A good work contract should include the following:

• Name of employer and”household employee”
• Wages (including tax withholding—see section on Employer’s Responsibilities) and benefits (e.g., mileage, meals, vacation, holidays)
• When and how payment will be made
• Hours of work
• Employee’s Social Security number
• Duties to be performed (i.e., the job description)
• Unacceptable behavior (e.g., smoking, abusive language, tardiness, etc.)
• Termination (how much notice, reasons for termination without notice, etc.)
• Dated signatures of employee and employer

Finding the Right Home Care Worker

Set aside some time as you approach this critical next step: finding the appropriate person to fit the job description. One of the best ways to find a helper is to get a personal recommendation from a trusted relative or friend. Churches, synagogues, senior centers, Independent Living Centers and local college career centers, especially those which have nursing or social work programs, are good places to advertise for in-home help. Listings for these places can be found in your local phone book.

Most communities have attendant registries that can be an excellent resource for finding in-home help because they typically provide some initial screening of applicants. When calling an attendant registry (generally listed under Nurses and Nurse Registries in the phone book), it is important to inquire about their particular screening process and/or training requirements as well as about any fees charged. While some are free, fees for using a registry can vary greatly. It is a good idea to shop around and obtain the best service at an affordable. There are also nonprofit community agencies (generally listed under Social & Human Services for Individuals & Families in the phone book) that maintain lists of individuals available to perform all kinds of household tasks, from cleaning and laundry to repairs and gardening.

If all of the above sources fail to produce an in-home worker, you may choose to advertise in the “Help Wanted” classified section of a community college, local paper or neighborhood newsletter. The advertisement, at the minimum, should include hours, a brief description of duties, telephone number and best time to call, e.g.: “Home Care Assistant needed to provide supervision and companionship to older adult with memory loss. Must be compassionate, reliable and able to assist with bathing, dressing and eating. References required. Call to apply.”

Interviewing the Applicant

You do not have to hold a face-to-face interview with every person who applies for the job. Some screening over the telephone is appropriate. In screening applicants over the telephone, caregivers should describe the job in detail and state specific expectations listed in the work contract as well as information about the hours and wages. At this time, it is also important to ask about the applicant’s past experience and whether he/she has references. If the applicant sounds acceptable, then an interview should be scheduled. Consider having another family member, the care recipient (if appropriate) or friend sit in on the interview to provide a
second opinion.

In preparation for the interview, the caregiver should have a list of questions pertinent to the job description and a sample work contract ready for the applicant to read. The following are some suggested questions for the interview:

• Where have you worked before?
• What were your duties?
• How do you feel about caring for a disabled person? Or a person with memory problems?
• Have you had experience cooking for other people?
• How do you handle people who are angry, stubborn, fearful?
• Do you have a car? Would you be able to transfer someone from a wheelchair into a car or into a bed?
• What days and hours would you be available? How many hours per week?
• Is there anything in the job description that you are uncomfortable doing?
• Can you give me two work-related and one personal reference?

Consider what qualities/skills you require and what you can train a good candidate to do.

Be sure that you have a chance to watch the interactions between the in-home worker and the family member for whom he or she will be providing care. You may want to do this at the end of the interview with individuals you feel are good candidates, or you may want to invite the top two candidates back to meet with your family member. If your family member is able, he or she should be included in the interview process and in making the final decision.

Immediately after the interview, it is important for you to write down first impressions, and if possible, discuss these with another family member or friend. Consider the person most qualified for the job and with whom you feel most comfortable. Always check the references of at least two final applicants. Don’t wait too long to make an offer, as good applicants may find another job. If the job offer is accepted, you and the in-home helper should set a date to sign the contract and begin work. Both employer and employee should keep a copy of the contract.

What Are the Employer’s Responsibilities?

As an employer of a “household employee,” there are several legal considerations. First, household employers should verify that their household insurance (renter’s or homeowner’s) covers household employees in case of an accident. It is also imperative that the employer be fully informed of the legal responsibility of paying taxes for household employees.

As the employer, you may also be responsible for withholding Social Security taxes, Medicare taxes and/or federal unemployment tax and filing them with the Internal Revenue Service annually or quarterly. Social Security taxes are owed by both the employer and the employee. Rules governing the amount(s) to be withheld and payment schedules can change annually. For information on paying federal taxes for household employees, call (800) TAX-FORM and ask for Publication 926 or view it on the web at www.irs.gov/formspubs/index.html [Scroll down to publication number 926.].

There are also state regulations. Some states require that employers pay state tax and/or state disability insurance. To find out the regulations in your state, call the state employment department listed in the government section of your local phonebook. The penalties for not paying taxes on household employees include paying the back taxes and paying interest and penalty fines.

There is one other requirement that every employer should know. Each employee is required to fill out an Employment Eligibility Verification form I-9 and a record of this should be kept on file. This form verifies that the person is legally entitled to work in the United States. The form can be downloaded from the web at www.irs.gov/formspubs/index.html or ordered by calling (800) TAX-FORM.

FCA advises that household employers and employees stay informed and comply with state and federal tax laws. There are often local services available to seniors who need assistance in filing tax statements for household employees.

Making Your Home Care Situation Work

The relationships between the family, the person who requires assistance and the in-home worker are very important. Consequently, it is imperative that you take the time to go carefully through the selection process. Good communication is essential for a good relationship. Schedule regular times to meet and discuss concerns, problems and/or changes. It is also important to make expectations clear and to provide adequate training to meet those expectations. If you hire a home care worker on your own, it is important you feel comfortable both providing training and firing the worker if necessary. If the person you have hired is doing a great job, be sure to tell him or her. A smile and well-deserved praise can make a big difference. None of us likes to feel to feel that our work is not appreciated.

Additional Resources:

• Consumer Reports Complete Guide to Health Services for Seniors by Trudy Lieberman and the Editors of Consumer Reports, (2000), $19.95.
• Homecare: The Best! How to Get It, Give It, and Live With It by Jo Whatley Cheatham. ProSoPress (1999), $14.95.
• The Caregiver Helpbook, Powerful Tools for Caregiving by Vicki L. Schmall, Ph.D., Marilyn Cleland, R.N., Marilynn Sturdevant, R.N., M.S.W., L.C.S.W., Legacy Caregiver Services, Portland, www.legacyhealth.org, (503) 413-6578, $20.00.
• The following two booklets were written specifically for individuals with spinal cord injuries, but they contain valuable information and resources for anyone hiring in-home help:
• Hiring & Management of Personal Care Assistants for Individuals with Spinal Cord Injuries. It is available on the web at www.tbi-sci.org/pdf/pas.pdf.
• Managing Personal Assistants: A Consumer Guide written by the Paralyzed Veterans Association available on the web at www.pva.org by calling (888) 860-7244.

Organizations:

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, head injury, Parkinson’s and other debilitating disorders that strike adults.
 

American Association for Homecare
625 Slaters Lane, Suite 200
Alexandria, VA 22314-1171
(703) 836-6263
Website: www.aahomecare.org

American Association of Homes and Services for the Aging
901 E Street NW, Suite 500
Washington, DC 20004-2001
(202) 783-2242
Website: www.aahsa.org

Children of Aging Parents
1609 Woodbourne Road, Suite 302-A
Levittown, PA 19057
(800) 227-7294
Website: www.caps4caregivers.org

National Association for Home Care (NAHC)
228 7th Street, SE
Washington, DC 20003
(202) 547-7424
Website: www.nahc.org

United Seniors Health Cooperative
409 Third St, SW, Suite 200
Washington, DC 20024
(202) 479-6973
Website: www.unitedseniorshealth.org

Visiting Nurses Association of America
11 Beacon Street, Suite 910
Boston, MA 02108
(617) 523-4042
Website: www.vnaa.org

Prepared by Family Caregiver Alliance and funded by the Archstone Foundation. Revised November, 2001. © All rights reserved.

When someone is no longer able to handle his or her own financial or personal affairs, the Court can appoint an individual or professional to act on behalf of the incapacitated person. The legal terminology for these protective proceedings varies state by state. In some states, the term “guardianship” is used for all protective proceedings, whether for a minor or adult. In others, the term “guardianship” is used to describe a proceeding giving authority over an individual’s financial affairs and “conservatorship” is used to describe a proceeding giving authority over an individual’s personal affairs. This Fact Sheet applies to California law; for advice on protective proceedings in other states, consult a knowledgeable attorney.

Q. What is a probate conservatorship?
A probate conservatorship is a judicial procedure in which someone (a conservator) is appointed to manage another person’s (the conservatee’s) financial and/or personal affairs. The establishment of a conservatorship restricts the conservatee’s powers over financial and personal care decisions.

Q. When is a conservatorship needed?
A conservatorship may be needed when someone is incompetent to manage his or her own financial affairs and/or personal care, and has no viable alternative method of delegating these duties to another (either through a durable power of attorney, living trust or other means).

Q. What is a conservator of the person?
A conservator of the person is responsible for making decisions about personal matters for the conservatee, including decisions about medical care, food, clothing, and residence. Under a probate conservatorship, the conservator may not place the conservatee into a locked mental institution against his or her will.

Q. What is a conservator of the estate?
A conservator of the estate is responsible for handling the financial affairs of the conservatee. The conservator has the power to collect all the conservatee’s assets, pay bills, make investments, etc. However, the conservator must seek court supervision for major transactions, such as the purchase or sale of real property, borrowing money and gifting of assets.

Q. How is a conservatorship established?
A relative, friend or a public official may petition the court for the appointment of a conservator of an individual. The petition must contain facts establishing why the individual cannot manage his financial affairs and/or make decisions concerning his personal care.

Once a petition is filed with the court, a court investigator is appointed to interview the proposed conservatee. The investigator reports back to the court with an opinion on whether or not the appointment of a conservator is justified.

The petition is set for hearing and the conservatee must appear in court unless medically unable to do so. The judge determines, based on the petition, the investigator’s report, and any evidence taken during the hearing, whether or not the conservatorship is required and what types of special powers may be granted to the conservator.

Q. What are the disadvantages of a conservatorship?
Because a conservatorship is a court supervised proceeding, there may be substantial costs in establishing it, such as court filing fees, legal fees, investigator’s fees and conservator’s fees.

In addition, a conservatorship is a public proceeding and the conservatee’s assets, income and expenses become a matter of public record.

The conservatorship can be a cumbersome method of managing a person’s financial affairs, as the conservator must return to court for approval of certain transactions, such as the sale of real property, borrowing money, setting up a trust, etc. These formal court hearings require additional attorney’s fees and can create delays in completing these transactions.

Q. What are the advantages of a conservatorship?
While the court supervision makes a conservatorship more costly and time consuming than other methods of management, it offers a higher degree of protection to the conservatee than other management mechanisms. The conservator must file an inventory which lists all the property of the conservatee and must file accountings with the court that reflect all transactions involving the conservatee’s assets.

A conservatorship allows for the management of an incapacitated person’s affairs when he or she does not have an alternative mechanism in place to do so.

Another advantage to a conservatorship proceeding is that it provides a structured method to assist an incapacitated individual who may be reluctant to accept such assistance.

Q. Do I need a conservatorship to place my relative in a nursing home?
It depends—if a person does not object to going into a nursing home, a relative may sign the admission agreement as an agent or as a “responsible party” to place a person in a nursing home. That person may not make medical care decisions on behalf of the individual unless he or she has authority to do so as an agent under a durable power of attorney for health care or as a court-appointed conservator. However, if a person objects or is unwilling to go to a nursing home, a conservatorship is required.

Q. What are the alternatives to a conservatorship?

• Revocable living trust. Through the establishment of a revocable living trust the individual can appoint a trustee to manage his or her financial affairs and thus can avoid the need for an appointment of a conservator of the estate. A person must be competent to establish a living trust.
• Durable Power of Attorney for Asset Management. A durable power of attorney is a document in which the individual can delegate to an agent the power to make financial transactions on his behalf if he is unable to do so himself. However, the individual must be competent to execute a durable power of attorney and the agent acting under the durable power of attorney is not subject to court review of his or her actions.
• Durable Power of Attorney for Health Care. An individual can nominate an agent to make health care decisions on his behalf in a durable power of attorney for health care. These health care decisions can also include the decision to withdraw or continue life support systems. As with a living trust and durable power of attorney for asset management, a person must be competent to execute a durable power of attorney for health care.
• Joint tenancy property. While the joint tenant may make decisions regarding property held in joint tenancy, significant risks make this form of ownership a poor choice for the purposes of asset management. In particular, a joint tenancy allows either joint tenant access to the funds and thus one joint tenant can withdraw all the joint tenancy funds. Further, there can be adverse tax and estate planning consequences as a result of creating a joint tenancy.
• Management of community property by a spouse. A spouse who is competent may manage the community property on behalf of the spouse who is incompetent without the need of a conservatorship. The well spouse must seek court approval in order to conduct some transactions on behalf of the incapacitated spouse. These transactions include sales, borrowing money, leases, and gifts of property.
• Establishment of representative payee. It is possible to have a substitute payee appointed for an incapacitated person who receives only governmental benefits, i.e., Social Security or SSI. The substituted payee, a trustworthy relative or friend, can manage that person’s funds without the need of obtaining a conservatorship.

Q: What is an LPS (Lanterman-Petris-Short Act) conservatorship?
An LPS conservatorship is a court proceeding in which a conservator is appointed for a person who has been found to be “gravely disabled” and can be used to involuntarily commit an individual to a mental institution.

It is designed for persons with serious mental disorders, or who are impaired by chronic alcoholism. An LPS conservatorship, unlike a probate conservatorship, must be initiated by the county government—a spouse or other relative cannot petition for an LPS conservatorship.

Recommended Readings

The Conservatorship Book, Lisa Goldoftas and Elizabeth A. Hendrickson, fifth edition, 2002, Nolo Press, 950 Parker St., Berkeley, CA 94710, (510) 549-1976.

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s disease and other
debilitating health conditions that strike adults.

National Academy of Elder Law Attorneys
1604 N. Country Club Rd.
Tuscon, AZ 85716
(520) 881-4005
Website: www.naela.org
Information on how to choose an elder law attorney.

Written by Harriet P. Prensky. Ms. Prensky is a certified elder law attorney and partner in the law firm of Prensky & Tobin in Mill Valley, California. She focuses on legal problems of the elderly and disabled, estate planning and probate, and is a Fellow on the National Academy of Elder Law Attorneys. Prepared by Family Caregiver Alliance in cooperation with California’s Caregiver Resource Centers. Funded by the California Department of Mental Health. © 2004 Family Caregiver Alliance. All rights reserved.

Caregivers may feel resentful towards other family members who they feel have not offered enough assistance. Managing care for someone who has a cognitive impairment may leave caregivers feeling that they will not be able to participate as fully as they would like in family gatherings. Already feeling overwhelmed with caregiving tasks, stressed-out caregivers may view traditional holiday preparations as more of a drain of precious energy than a joy.

Following are some suggestions that may help make the holidays more enjoyable for you and your loved ones. Keep in mind that the holidays can, in fact, provide unique opportunities to seek better communication, connection and support from family and friends.

An Opportunity for Communication

It’s hard to know how much to communicate about a loved one’s decline in cognitive functioning and personal care needs. Whom do you tell? How much do you tell?

Although it is understandable to have reservations about discussing a loved one’s impairments, honest communication about the realities of the caregiving situation offers others the opportunity to respond with assistance. Sharing the truths of your situation may help reduce some of the feelings of isolation and lack of appreciation common in caregivers.

Holiday greetings and a brief note

Some caregivers have had success in writing a brief note describing the person’s condition and enclosing it in a holiday greeting card. This can be a nonthreatening way to inform distant or uninvolved relatives about the realities of the caregiving situation. If written in a tone that’s not accusatory or guilt-inducing, family members may be more forthcoming with assistance or, at least, have a better understanding of the effort you are putting into providing care.

Let sleeping dogs lie?

It is common for caregivers to be disappointed with family members who they feel are not “pulling their weight” in caregiving responsibilities. If this holds true for you, and your goal is to enjoy the holidays, you must decide how much and when to communicate this disappointment. Consider clearing the air before the holidays or perhaps resolve within yourself to put those feelings on hold, with the intention to discuss the matter after the holiday season passes. In the meantime, enjoy the holiday!

Be clear about your energy level

Let family members know that your caregiving duties are keeping you very busy and that you only have so much energy for holiday preparation and hosting duties.

Accept the need to adapt

Caregivers often have to adapt their traditional role or experience of the holidays. This may mean allowing another family member to host more time-intensive festivities. You may need to modify the amount of time away from home to match the comfort level of your impaired loved one. You may also have to choose which events to attend based on which would be the simplest, least exhausting and most enjoyable for the person for whom you provide care—and for you.

The visit room

Don’t expect the person with cognitive impairment to be able to adapt to all situations; you may need to adapt the environment to their needs. See if you can arrange to have another room in the house designated as a quiet place for the impaired person. Many people with dementia find multiple conversations and background noise disturbing. To avoid this anxiety, the person may benefit from time in a quieter room with less stimulus where family members could take turns visiting with them.

Share your wish list

• Respite: some caregivers ask for time off from caregiving duties as a gift for the holidays. This could mean another family member gives you a break. Sometimes asking for a Saturday off “in the next three months” is more accepted, as family members can then schedule it into their calendars. If this is not possible, perhaps they would consider paying for a home care worker or a stay at a respite facility. Your FCA Family Consultant can help you locate these resources in your area.
• Home repairs: Do light bulbs need changing, or grab bars need installation? That maddening pile of junk in the garage needs to go to the dump? Tasks such as these may be the perfect way for a family member to help out if providing personal care is too uncomfortable for them.
• Care for you! How about a gift certificate for a massage, facial or manicure? How about an opportunity to spend the day fishing or a walk in the outdoors?
• Book your homecare worker early! Speak with your home care worker or home care agency early about your holiday plans!

Schedule one-on-one time

While caregiving, it is easy to get caught up in all the tasks of personal care and homemaking chores. Make a point of setting some time aside this holiday season to enjoy the person you care for in a relaxed, one-on-one context. The best activities are those which take advantage of long-term memory—usually less impaired in people with dementia. Try looking through family photo albums or unpacking holiday decorations, which may stimulate memories.

Reflect on the rewards

Reflecting on the rewards of caregiving can help maintain your self-esteem. It may feel very rewarding to know that you are fulfilling a vow or promise you have made to the person for whom you provide care. Your caregiving may be an expression of living up to your personal ideals or religious beliefs. You may also be experiencing a great deal of growth as you learn new skills and meet challenges in ways you never imagined possible.

A little thank you goes a long way

After the holidays, write a thank you note to family members or friends who spent time with your loved one. Emphasize the positive impact their visit or brief time spent with your loved one had on them. This may reinforce positive feelings from their visit and diminish any discomfort they experienced. They may then be more encouraged to visit again or be more supportive of your efforts.

As caregivers, we often use intuition to help us decide what to do. No one ever gave us lessons on how to relate to someone with memory loss. Unfortunately, dealing with Alzheimer’s disease and other dementias is counter-intuitive; i.e., often the right thing to do is exactly opposite that which seems like the right thing to do. Here is some practical advice:

1. Being Reasonable, Rational and Logical Will Just Get You into Trouble. When someone is acting in ways that don’t make sense, we tend to carefully explain the situation, calling on his or her sense of appropriateness to get compliance. However, the person with dementia doesn’t have a “boss” in his brain any longer, so he does not respond to our arguments, no matter how logical. Straightforward, simple sentences about what is going to happen are usually the best.
2. People With Dementia Do Not Need to Be Grounded in Reality. When someone has memory loss, he often forgets important things, e.g., that his mother is deceased. When we remind him of this loss, we remind him about the pain of that loss also. When someone wants to go home, reassuring him that he is at home often leads to an argument.  Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia.
3. You Cannot Be a Perfect Caregiver. Just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the caregiving journey.
4. Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor?
5. Making Agreements Doesn’t Work. If you ask your loved one to not do something ever again, or to remember to do something, it will soon be forgotten. For people in early stage dementia, leaving notes as reminders can sometimes help, but as the disease progresses, this will not work. Taking action, rearranging the environment, rather than talking and discussing, is usually a more successful approach. For example, getting a teakettle with an automatic “off” switch is better than warning someone of the dangers of leaving the stove on.
6. Doctors Often Need to Be Educated By You. Telling the doctor what you see at home is important. The doctor can’t tell during an examination that your loved one has been up all night pacing. Sometimes doctors, too, need to deal with therapeutic lying; e.g., telling the patient that an antidepressant is for memory rather than depression.
7. You Can’t Do It All.  It’s OK to Accept Help Before You Get Desperate. When people offer to help, the answer should always be “YES.” Have a list of things people can do to help you, whether it is bringing a meal, picking up a prescription, helping trim the roses or staying with your loved one while you run an errand. This will reinforce offers of help. It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support.
8. It Is Easy to Both Overestimate and Underestimate What Your Loved One Can Do. It is often easier to do something for our loved ones than to let them do it for themselves. However, if we do it for them, they will lose the ability to be independent in that skill. On the other hand, if we insist individuals do something for themselves and they get frustrated, we just make our loved one’s agitated and probably haven’t increased their abilities to perform tasks. Not only is it a constant juggle to find the balance, but be aware that the balance may shift from day to day.
9. Tell, Don’t Ask. Asking “What would you like for dinner?” may have been a perfectly normal question at another time. But now we are asking our loved one to come up with an answer when he or she might not have the words for what they want, might not be hungry, and even if they answer, might not want the food when it is served after all. Saying “We are going to eat now” encourages the person to eat and doesn’t put them in the dilemma of having failed to respond.
10. It Is Perfectly Normal to Question the Diagnosis When Someone Has Moments of Lucidity. One of the hardest things to do is to remember that we are responding to a disease, not the person who once was.  Everyone with dementia has times when they make perfect sense and can respond appropriately. We often feel like that person has been faking it or that we have been exaggerating the problem when these moments occur. We are not imagining things—they are just having one of those moments, to be treasured when they occur.

Want more information? Our newly updated Fact Sheet, Caregiver’s Guide to Understanding Dementia Behaviors, is now available!

As you’ve watched your parents age, perhaps you have struggled with situations such as these:

You’ve traveled to visit your mother for the holidays, and found her refrigerator nearly empty, her checkbook misplaced and her finances in complete disarray.

Or a neighbor calls you to report that your father was wandering in the street, unable to find the home he’s lived in for 30 years.

Or your mother has neglected to take her diabetes medications, severely compromising her health.

If there is a decline in cognitive abilities as a result of Alzheimer’s disease or a related dementia, or a shift in a medical condition that requires increased care, there is clear cause to be concerned about your parent’s welfare. The need to relocate your parent to a safer environment may become apparent.

But where should he or she live? Often your first inclination is to move Mom or Dad into your home—but this major life change deserves thoughtful examination, and there are many alternatives to explore. This Fact Sheet offers helpful advice and summarizes the issues to consider before making the important and challenging decisions regarding relocating your parent.

Open Discussions

Open and honest discussion with your parent and other family members becomes an essential first step when you are trying to decide whether relocating your parent is the right thing to do. Family meetings with your parent, spouse, children, siblings and other key people will help everyone share their views and will help you decide how best to proceed. Active communication among all family members is the building block to a strong support system for an older parent and all family members involved.

Although some of these discussions may be very difficult and emotional, several topics require attention. Together, the family, including your parent, will need to talk about all possible residential options, each person’s role in the transition, the type of care to be provided, changes in lifestyle, finances, and the physical setting of the new home. Clear expectations must be defined. The following topics can help guide your discussions.

Level of Care Needed

As your parent gets older, his/her care needs will change, and in most cases become more challenging. Consider what you will and will not be able to do for your parent. Developing a strategy for how the care will be provided is essential and requires practicality and planning.

• Evaluate whether your parent needs constant supervision or assistance throughout the day and consider how this will be provided.
• Determine which activities of daily living (eating, bathing, toileting) your parent can perform independently.
• Determine your comfort level for providing personal care such as bathing or changing an adult diaper.
• Evaluate your health and physical abilities and decide if you are able to provide care for your parent.
• Expect changes in your parent’s medical or cognitive condition.
• Explore the availability of services such as a friendly visitor, in-home care or adult day services.
• Investigate back-up long term arrangements and options if living with your parent does not work or is not your choice.
• Determine the type of medical care that will be needed for your parent, and whether appropriate physicians and services are available in your community.

Family Dynamics

Families are rich in historical experiences, and many of your positive and negative feelings about your parents and other family members will play a role in your decision to relocate or live with a parent. Be honest with yourself and do not allow unresolved conflicts or feelings of guilt or obligation pressure you into taking on more than you can manage.

• Be honest with yourself and others about the significant life changes that relocating your parent will mean for you, your parent, your siblings, your spouse and children.
• Try to come to terms with past disagreements between you and your parent.
• When deciding whether to relocate or move your parent into your home, consider the opinions of your spouse, children, siblings and other family members.
• Come to an agreement with your siblings regarding how much and what kind of help you will receive from them.

Consider Various Living Arrangements

Moving your parent into your home is one option, but you and your family should take some time to consider other living arrangements as well. The type of housing and living arrangement will largely depend on your parent’s care needs, finances and available options. Also, when deciding where a parent should live, family members need to discuss, understand and accept the benefits and drawbacks of living close to one relative versus another.

Often, the choice of location can cause conflict between family members because those living near the parent bear most of the responsibility for the parent’s care, and may feel that those living further away do not help enough. On the other hand, family members who live far away can feel frustrated that they do not have the opportunity to participate more in providing care. An open dialogue and an agreement on how to share local and long distance caregiving is essential.

The following list outlines different types of living arrangements that may be appropriate for your parent. Each community offers different choices. Remember that Medicare does not usually cover these expenses. A fuller discussion of living arrangements can be found in Family Caregiver Alliance’s Fact Sheets, Out-of-Home Care Options and Assisted Living and Supportive Housing.

• A nearby apartment, house or retirement community: Your parent may still function happily and safely in his/her own independent environment with a little assistance. In this case, renting a nearby apartment or small home will allow your parent to maintain his/her independence and enable family members to provide consistent monitoring and support. Independent retirement communities may offer individual units with group meals and social activities. Sharing an apartment or house with a friend or relative may be another option. There are also agencies in some cities that arrange for shared living situations.
• Assisted Living Facility: Individuals who are fairly independent but require some daily supervision and assistance with house chores and personal care may consider an assisted living facility. Assisted living facilities may offer rooms or apartment-style accommodations and, often, social activities. Meals are provided. Staff is also available to assist with different care needs, such as bathing, grooming, eating or using the toilet, and care is arranged as needed by the individual. The monthly charge for assisted living is determined by how much care a person requires.
• Residential Care Facility: These facilities are small group homes that provide constant supervision, meals and care for people who cannot be left alone but do not require skilled nursing care. Residential care facilities provide assistance with bathing, grooming, eating, using the toilet and walking, and they also provide socialization and recreational activities.
• Intermediate Care Facility: This type of facility provides round-the-clock care for those who require help with bathing, grooming, going to the toilet and walking. Individuals in these facilities cannot live independently and require nursing care, although the nursing care is not offered 24 hours a day.
• Skilled Nursing Facility: Skilled nursing facilities provide continuous nursing services and are designed to provide high levels of personal care and medical care, such as administration of injections, monitoring of blood pressure, managing ventilators and providing intravenous feedings to individuals who cannot function independently. People in skilled nursing facilities usually require help with the majority of their self-care needs, and such individuals would probably not be able to live in a home environment.

When Your Parent Moves in with You

Change of Family Roles Living with a parent will lead to a change in family roles. A once-authoritative parent may no longer act like a “parent”—you may become the guardian who gives direction and controls many aspects of your parent’s life. You may need your child/children to help with more household responsibilities and with a grandparent. These role changes are hard adjustments for everyone.

• Determine your ease with becoming the decision maker and the person with authority.
• Be prepared for resistance from your parent if they feel that they can no longer set the rules, control their situation or fear losing independence.
• When possible, allow some negotiation in decision-making activities so that you can have a win-win situation.
• Decide on what you expect from your parent in terms of completion of chores or financial contributions.
• Think about your spouse’s and children’s readiness to help with caregiving.

Lifestyle Changes You and your parent probably have very different lifestyles. Sleeping cycles, eating patterns, social calendars and daily activities may need adjustments in order to guarantee a smooth transition.

• Talk about and plan how to accommodate bed times, nap schedules and sleeping habits of all family members in the house. Discuss what types of food you eat, when meals are prepared, and if special diets are required and how they will be accommodated.
• Assess whether smoking/nonsmoking or drinking/nondrinking practices are compatible.
• Consider how you can support your parent’s continued participation in social networks such as visiting friends and attending a place of worship and how transportation to these and other activities will be managed.
• Encourage your parent to keep enjoyable and safe hobbies.
• Consider whether your parent will be fully integrated into your family’s activities or whether he/she will maintain an independent social life.
• Consider how the household noise level and general activity pattern will affect your parent.

The Loss of Time

Caregiving requires a significant amount of time and is very likely to impact your work, family time, personal time and sleep.

• Determine the amount of time you can devote to your parent’s care needs. When will you make phone calls for appointments or to set up needed services? When will you be able to take your parent to medical appointments?
• Evaluate whether you will need to make adjustments to your current work schedule.
• If you will reduce your work hours, determine the implications for your financial picture, career advancement, health insurance and retirement benefits.
• Consider whether you will have time for your spouse, children and friends.
• If your parent requires full-time supervision, who will provide it while you are at work?
• Consider the reduced amount of private time you will have to pursue your own interests or hobbies or what your need is for time alone on a daily basis.
• Expect that you will, at times, become exhausted and will need to find a way to rest.
• Investigate how to arrange for some time off from caregiving duties (”respite”) and enlist the help of your family members, close friends or an aide.

Your Home

Physical living arrangements must be adequate if your parent is to move in. There must be enough room and a layout that is adaptable to an older adult who may have mobility or vision problems. A home may require special adaptations to make it safe. Many of these changes are inexpensive but need time and planning to implement.

• Evaluate the amount of available space and whether there is enough privacy.
• Think about where your parent will sleep. How will a child feel if he or she has to give up a room for a grandparent?
• If possible, locate your parent on the first floor in order to avoid stairs.
• Consider major changes that may be needed in order to accommodate any disabilities or mobility problems, e.g. wheelchair accessible bathroom, shower, etc.
• Determine what assistive devices may be needed such as grab bars in the bathroom, raised toilet seats, handrails and a ramp.
• If your parent wanders, consider special locks, door chimes and other devices that will help keep doors and windows safely secured.
• Look through your home for hazards such as dangling cords, toxins, slippery surfaces, unsteady chairs, throw rugs.
• Install bright non-glare lights above all walkways, and low-cost adhesive strips on steps and other potentially slippery areas such as bathrooms and showers.
• Adjust temperature controls so that the house is not too hot or too cold. Be aware that older people often like their environment warmer and this may affect both your comfort and your utility bills.
• Discuss how you might incorporate your parent’s furniture into your home.
• Review how existing or new pets will be integrated into the new home situation.

Financial Arrangements

Individual financial information is not usually shared among family members. However, if you are caring for a parent it may become necessary for you to become more involved in his/her personal finances including paying bills, monitoring accounts and managing investments. This could create problems with your parent or siblings who may question how you are handling your parent’s money.

• Agree upon how much, if any, financial payment your parent will provide towards their living expenses. Will they pay for rent, food and other costs?
• Your siblings may be resentful of any money you might receive. Openly discuss financial arrangements with siblings to keep them updated on new expenditures and apprised of accounts.
• Come to an agreement between your parent and siblings regarding payment of out-of-pocket expenses.
• Investigate the option of automatic payment of recurring bills.
• Look into free or low-cost services that assist with Medicare paperwork for older adults.

Difficulties with the Move

It is likely that your parent has lived in his/her current home for many years and has developed strong ties to community, family, friends, healthcare providers, social life and daily routine. Packing and moving out of a house is a significant chore for anybody, but for the older adult who has decades’ worth of memories and possessions, moving can represent a tremendous emotional challenge. Moving away from this familiar and comfortable setting is diffcult and can cause great sadness. Furthermore, leaving one’s own house represents a decrease in independence and signals a new life stage.

In some communities, there are specialized companies that will help organize a senior’s move to a new location. But for most families, the adult children perform that task. Again, open communication will help ease the way.

While you help your parent pack, talk through the difficult feelings, acknowledge the loss that your parent is experiencing and reassure him/her that you are all making the best decision possible. Allow time and opportunity to reminisce. Your parent will need time to adjust to his/her new living environment and role with your family. Your patience and support will help make this transition smoother. An outside counselor may also be helpful.

Rewards

Despite the challenges, many adult children find that providing support and care for their parents is one of the most rewarding experiences they have ever had. Parents can contribute to the family through sharing their past and become an integral part of your household. Grandchildren have the unique opportunity to learn and absorb family history. Caregiving carries with it the extraordinary opportunity to give back what your parent once provided to you.

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Website: www.caregiver.org
E-mail: info@caregiver.org
Click here for FCA’s online support groups

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers advice and information on current social, public policy and caregiving issues and provides assistance in the development of public and private caregiver support programs.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, brain injury, Parkinson’s and other chronic health conditions that strike adults.