HealtyDayS

It seems simple enough: Donate organs. Save lives. Yet many people don’t, and many lives are lost as a result.

More than 95,000 people are on the U.S. organ transplant waiting list, waiting for kidneys, livers, pancreases, intestines, bone marrow, hearts and lungs. Nearly 6,000 people died waiting for an organ transplant in 2006 — that’s 16 people a day.

If you’ve delayed your decision to be a donor because of a belief you’ve never fully explored, here are answers to some common organ transplant myths and concerns.

How to donate

Contrary to popular belief, signing a donor card or your driver’s license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. Hospitals seek consent of the next of kin before removing organs. If your family knows you wanted to be a donor, it makes it easier for them to give their consent.

A signed donor card or driver’s license provides proof to your family that you wanted to be a donor, but these cards often aren’t readily available. They also aren’t usually legally binding. Signing a state or national donor registry is helpful but provides no guarantee that you’ll be a donor. Registries aren’t always checked and aren’t legally binding. Again, the best way to ensure that your wishes are carried out is to tell your family that you want to be a donor.

If you have no next of kin or you doubt your family will agree to donate your organs, you can assign durable power of attorney to someone who you know will abide by your wishes. A lawyer can help you prepare this document.

The issues surrounding serious illness and death aren’t easy to discuss, but it’s far easier on everyone if you decide which medical care options you’d like to pursue before you’re faced with a serious accident or illness. If you don’t, you may find yourself in a situation in which you’re unable to communicate your wishes regarding the extent of treatment efforts, such as resuscitation and life-support machines.

Living wills are just one part of advance directives — tools that can help you avoid just that kind of situation. Learn more about what these tools are, how to create them and how valuable they can be to both you and your family.

Advance directives: More than just living wills

Advance directives are written instructions regarding your medical care preferences. Your family and medical professionals will turn to these directives if you lose the capacity to make your own health care decisions or you sustain an injury that renders you unable to express your wishes. Any competent individual age 18 or older may prepare an advance directive.

Advance directives primarily include two parts:

• Living will. This written, legal document spells out the types of medical treatments and life-sustaining measures you do and don’t want, such as mechanical respiration and tube feeding. In some states the living will may be known by a different name, such as health care declaration or health care directive.
• Medical power of attorney (POA). Also called a durable power of attorney for health care or a health care agent or proxy, the medical POA form is a legal document that designates an individual to make medical decisions on your behalf in the event you’re unable to do so. The medical POA document is different from the power of attorney form that authorizes someone to make financial transactions for you. If you don’t appoint a medical POA, the decisions about your care default to your spouse. If you aren’t legally married, decisions fall to your adult children or your parents.

Each part has its limitations. For instance, you can’t possibly plan ahead for every situation, so what you include in your living will might not apply in certain instances. Your medical POA isn’t given a set of instructions on what to do in every situation, so you have to trust that this person will make decisions based on what’s best for you.

The best way to lessen those limitations is to combine the two types of advance directives with a conversation with your loved ones. Talk about what’s in your living will and explain how your values shaped your decisions. This gives your loved ones greater insight into what you’d want in medical situations.

Choose a decision maker

Carefully choosing and authorizing a person to act for you by naming him or her in a medical POA document is possibly the most important part of your discussion. That person doesn’t necessarily have to be a family member. You may want to have your health care decision maker be different from the person you choose to handle your financial matters. Some people are willing to make health care decisions but not financial decisions, and the reverse may also be true.

You don’t have to choose a health care agent, but it’s usually a good idea to do so, because he or she can make decisions in situations not anticipated in your written advance directive.

“Be sure to avoid picking someone out of feelings of guilt or obligation,” says Paul Takahashi, M.D., a specialist in geriatrics at Mayo Clinic, Rochester, Minn. “You need to feel comfortable that he or she is going to do what you would want.”

When selecting a health care agent, choose someone you trust and who you’re comfortable with. He or she should understand fully your medical care philosophy and wishes. It may be helpful, but not necessary, if this person lived in the same city or state as you do.

“The person should be levelheaded, mature and calm in a crisis,” adds Edward Creagan, M.D., a cancer specialist at Mayo Clinic, Rochester, Minn.

Once you’ve chosen a health care agent, let your family and close friends know.

Treatments to discuss

In determining your wishes, think about your values, such as the importance to you of independence and self-sufficiency and what you feel would make your life not worth living. Is the treatment lifesaving or life sustaining? Does that make any difference to you?

Although an infinite number of medical situations can arise, be sure to discuss the following treatments. It may help to talk with your doctor about these and other issues and terminology.

• Resuscitation. Restarts the heart when it has stopped beating (cardiac death). Determine if and when you would want to be resuscitated by cardiopulmonary resuscitation (CPR) or by a device that delivers an electric shock to stimulate the heart. Would it matter what stage of an illness or injury you were in?
• Mechanical ventilation. Takes over your breathing if you’re unable to do so. Consider if, when and for how long you would want to be placed on a mechanical ventilator. Would it matter what your prognosis was or if your condition was improving?
• Nutritional and hydration assistance. Supplies the body with nutrients and fluids intravenously or via a tube in the stomach. Decide if, when and for how long you would want to be fed in this manner. Would it matter what your prognosis was or if your condition was improving?
• Dialysis. Removes waste from your blood and manages fluid levels if your kidneys no longer function. Determine if, when and for how long you would want to receive this treatment. Would it matter whether the treatment would be permanent rather than temporary?
• Treatments in the end stages of life. Examples include but are not limited to antibiotics, pain medication and mechanical ventilation. Would you want to receive these as comfort (palliative) care if your prognosis was that it would only delay imminent death?

In general, these types of medical interventions can be helpful in temporary situations — situations you’re expected to recover from. But in end-of-life situations, medical interventions may only prolong discomfort. Many situations fall somewhere in between — where your chances for recovery are unknown or unclear. It’s these gray areas that are difficult to plan for.

Also determine whether you’d like to donate your organs, eyes and tissues for transplantation or your body for scientific study. If you wish to donate your body for scientific study, contact the medical school closest to your home for details.

Fill out the forms for your state

Put everything in writing. Each state has its own laws regarding advance directives. Your doctor can give you the proper forms. Or, state-specific forms are available from a variety of Web sites. The National Hospice and Palliative Care Organization offers free forms on its Web site.

Though not necessary, you may consider consulting an attorney about this process. “This can be wise, especially if you move to a different state,” says Dr. Creagan.

Once you’ve filled out the forms, give copies to your doctor, the person you’ve chosen as your medical POA, and other friends and family members. Your instinct might be to put your advance directives away somewhere safe, like a safe deposit box, but that will only make it difficult for your loved ones to find the forms when they need them.

“Advance directives can be very powerful,” says Dr. Takahashi. “It’s important to make sure they’re both accessible and utilized.”

Revisit and revise your wishes from time to time

As your health changes or your perspective on life changes, you might reconsider some of your advance directives. Read over your advance directive forms from time to time to see if you need to revise any of the instructions. You can change your mind about your advance directives at any time.

You’ll follow the same steps to revise your advance directives as you did when you first wrote them. Get new advance directive forms to fill out. Discuss your changes with your friends and family and your doctor. Then distribute copies of your new advance directives and ask your loved ones to destroy their earlier version.

If there isn’t time to redo the paperwork, you can always cancel your advance directive by telling your doctor and your family. As long as you’re able to understand your health condition, weigh the risks and benefits of treatment and communicate your wishes, you’re in charge of what happens to you.

How to talk about end-of-life issues

Injury, illness and death aren’t easy subjects to talk about. But the bottom line is that by planning ahead you can ensure you receive the type of medical care you want.

The best approach to discussing the subject is probably to be matter-of-fact and reassuring. If you want an advanced directive for yourself, explain to your family, friends and your doctor what your medical care philosophy is and what you’d want done in specific instances. If your family is morally opposed to some of your wishes or is divided over the issue, you might consider choosing someone more in keeping with your personal philosophy as your medical POA.

If you’re approaching parents or other family members with the suggestion that they create an advance directive, explain that it’s important for you and the family to know what they’d want done.

“Without advance directives, families can be torn apart trying to decide what is best for you,” says Dr. Creagan. “Discussing and deciding what you want in advance can take the burden off your family, who would otherwise have to guess at what you’d want done. And no one wants a court to decide his or her fate.”

Hospice care is for people who are nearing the end of their lives. Hospice care is designed to relieve or decrease pain, or other symptoms, and provide as much quality time as possible with family and friends. But unlike other medical care, the focus of hospice care is no longer on curing or treating the underlying disease. The goal of hospice care is to offer as high a quality of life as possible during a person’s final days. Learn more about what types of hospice care are available to your loved one and what to look for in a hospice care provider.

Hospice care: A time-honored approach

Until the 20th century, most people spent their last days at home, surrounded, cared for, and comforted by family and friends. That tradition faded as hospitals became places of healing in many Western countries. Hospice care began in England as an inpatient facility providing care and comfort for the dying. In the United States, people usually receive hospice care at home, since most Americans prefer to spend their final days at home.

With hospice care, instead of spending your last weeks or months in a hospital, you’re with loved ones in the home or a homelike setting. Although 90 percent of American hospice care is provided at home, hospice is available wherever you actually live, including nursing homes or assisted-living residences. Some residential hospices designed specifically for hospice care also exist.

Many people receiving hospice care have cancer, but hospice is available for people with any terminal illness such as heart disease, dementia, chronic obstructive pulmonary disease or any other condition.

Available hospice care services

Hospice care services offer a multidisciplinary team of professionals that work to maximize comfort for the terminally ill person and to help support the family members and loved ones. A hospice care team consists of:

• Doctors. Both your loved one’s primary care doctor and the hospice’s medical director oversee his or her care. The primary care doctor remains the main doctor, but the hospice medical director often has added expertise in symptom management and end-of-life care that can supplement the care provided by the primary doctor.
• Nurses. Nurses come to your loved one’s home or other care setting for regular evaluations and report back to your loved one’s doctors. Nurses also provide help and support for family members and friends. They can address any concerns you have about end-of-life issues and symptom management. How often nurses visit depends on how much care your loved one needs. Nurses are available at all times for emergency visits in case a change or crisis develops. They can also offer support and guidance at the time of death.
• Home health aides. Home health aides and homemaker services can assist you in caring for your loved one. Home health aides provide extra support for routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors are available to your loved one and his or her family. Many people in hospice care have connections to some spiritual services in their community, but the hospice can provide additional services, if desired.
• Social workers. Social workers provide counseling and support. They can also help you sort out insurance and other financial concerns.
• Volunteers. Trained hospice volunteers provide a variety of services, such as staying with your loved one while you run errands, providing transportation assistance or just being a companion by playing cards with your loved one or reading to him or her.
• Bereavement counselors. Trained bereavement counselors offer support and guidance for your loved one’s family during and after his or her death. Bereavement counselors continue to provide support for up to a year after your loved one’s death.

While the majority of people using hospice care receive care at home, sometimes it’s necessary to be admitted to the hospital. For instance, anytime a symptom can’t be managed by the hospice care team in the home setting, your loved one may need to be temporarily admitted to the hospital. Also, your loved one can be admitted to the hospital for up to five days in order to give his or her caregiver a rest from the stress of caregiving. This is called respite care.

How to select a program

Most hospice programs are run by nonprofit, independent organizations. Some are affiliated with hospitals, nursing homes or home health care agencies, and some are for-profit organizations.

You can learn about existing hospice programs from doctors, nurses, social workers and your local or state office on aging. You also might check with friends or neighbors who may have used such services before, or search the Yellow Pages. The National Hospice and Palliative Care Organization offers more information on hospice, including a provider directory, on its Web site. Also check to see if your state has a statewide hospice organization.

When evaluating available programs, ask the following:

• Is the hospice Medicare-certified?
• What services are available to the patient?
• What services are offered to the family?
• What bereavement services are available?
• How involved are the family members?
• How involved is the doctor?
• Who makes up the hospice care team, and how are they trained or screened?
• How will the individual’s pain and symptoms be managed?
• If circumstances change, can services be provided in different settings? Does the hospice have contracts with local nursing homes? Is residential hospice available?
• Is the program reviewed and licensed by the state or certified in some other way?
• Are all costs covered by insurance?

How much you pay for hospice care can vary greatly depending on the length and type of care necessary and your insurance coverage. Medicare and most private insurance plans, including managed care organizations, cover hospice care. Hospice is also covered by Medicaid in most states. Some hospice programs provide services on a sliding fee scale, based on your ability to pay, and may also provide some durable medical equipment for support within the home.

Care over cure

A hospice addresses two big fears a dying person may have — the fear of pain and the fear of being alone. The hospice staff administers appropriate pain relief, provides nursing care, and offers plenty of reassurance and support to your loved one and family members. Together, you can see to it that your loved one isn’t alone during this last and important phase of life.

The doctor says your loved one is dying. Though you knew the end of life would come eventually, you might not feel prepared to let your loved one go. But you can be prepared to help make your loved one’s last days of life as comfortable as possible. And understanding what to expect can reduce the anxiety you feel as the end of life draws near.

You can begin by learning about the common signs and symptoms of impending death. Though some signs at the end of life, such as irregular breathing and confusion, can be distressing, know that these are normal parts of the dying process.

How doctors can tell when the end of life is approaching

Predicting exactly when someone will die is very difficult. Doctors can estimate the end of life in terms of months, weeks or days. But some terminally ill people who seem near death will suddenly get better. Others will progress quicker than expected toward death.

In general, several signs can indicate that your loved one is at the end of life and is beginning the dying process. This is called the pre-active phase of dying, and it generally begins about two weeks before death, but this can vary. Signs that your loved one has entered this phase of the end of life include:

• Difficulty getting out of bed. Many formerly active people may find they no longer have the strength or energy to get out of bed at the end of life.
• Restlessness. This may manifest as agitation or the need to be moved or repositioned often.
• Withdrawal from activities. Your loved one may no longer want to participate in social activities he or she used to enjoy.
• Increased need for sleep. Your loved one may spend most of the day asleep as the end of life nears.
• Loss of appetite. It’s natural for people who are dying to gradually reduce the amount they eat and drink. Don’t force your loved one to eat and try not to take it personally if he or she refuses a meal you’ve spent time preparing. Provide only the foods that your loved one wants. Eating or not eating won’t slow down or speed up the dying process.
• Pauses in breathing. This can happen when the person is asleep or awake.
• Difficulty healing. Wounds and infections may not heal.
• Swelling in the arms and legs. Swelling may occur in other areas of the body, as well.
• Seeing people who have already died. Your loved one may speak about seeing or feeling the presence of loved ones who have died.
• Settling unfinished business. This might include calling for people he or she hasn’t seen in many years or expressing a need to tie up loose ends.

Sometimes your loved one might feel as if death is near. This may be another sign that your loved one is in the pre-active phase.

Preparing for the last phase of life: Choosing where to die

Talk with your loved one about his or her wishes for the last phase of life. These conversations can be uncomfortable and difficult, but they provide your loved one with the ability to maintain control and help in planning. Ask your doctor or your loved one’s doctor for suggestions on how to start such a conversation.

If your loved one has had a chronic illness for some time, you might have already discussed his or her wishes about end-of-life care. If not, you might have an idea, based on your knowledge of the person, where he or she would like to be in the last days of life. Most people say they’d prefer to die at home, but it isn’t always possible. Consult your loved one on his or her preferences for care, including:

• Home care. Many people choose to die in the familiarity of their own home or the home of a family member. This might require you to take on the role of caregiver, but you might also choose to have home care services to assist you.
• Hospice care. Hospice care takes place in a variety of settings. The majority of hospice care in the United States occurs at home. Hospice services might also be provided in a 24-hour residential care setting. Hospice personnel may offer their services at a nursing home, where they supplement the nursing home’s care.
• Hospital. Some people prefer the comfort of having nurses and doctors nearby at all times. In a hospital, your loved one is cared for by nurses, though you can help with some of the caregiving if you wish.
• Nursing home. Like hospitals and in-patient hospices, nursing homes have medical staff on duty at all times. If your loved one needs more advanced care, this might be an option. Also, some terminally ill people choose nursing home care to take pressure off their families.

Also consider costs for each type of service. Medicare or Medicaid may cover some of the costs, depending on your loved one’s situation. Discuss your options with your loved one’s health care team or with a social worker.

Spirituality at the end of life

Many terminally ill people seek religious or spiritual guidance at the end of their lives. Spirituality is the search for the sacred and the pursuit of meaning and purpose in life. It might be described as a dynamic process of turning inward to reflect on life, but at the same time turning outward to seek that which is beyond daily experience. For many people, spirituality is found in religion. Others find spirituality in nature, art, music or life in general.

As your loved one feels the end of life approaching, he or she may talk more often about spirituality. Your loved one may talk about the meaning of life or his or her relationship with a higher power. Talk with your loved one about spirituality if he or she wants to. Ask open-ended questions about his or her beliefs, such as, “What do you think your purpose in life has been?” or, “What is it that you still hope to do or accomplish in your life?” Depending on your loved one’s wishes, customs and beliefs, you may want to invite a spiritual leader — be it a pastor, rabbi, imam or community elder — to visit.

Do what’s appropriate for your loved one’s situation. If your family normally doesn’t speak of spirituality openly, don’t force the subject. But discuss spirituality if your loved one brings it up.

What to expect in the last days of life

Your loved one may begin to show other signs when death is imminent. This is called the active phase of dying and usually begins about three days before death. How people die varies greatly, but you can expect some of the common signs, including:

• Cool arms and legs. While the hands, arms, feet and legs will feel cool to the touch, your loved one’s trunk will feel warm.
• Bluish coloration. Fingers, earlobes, lips and nail beds may turn blue.
• Purple coloration on the legs. Also called mottling, this blotchy coloring is one of the clearest signs that death is approaching.
• No longer eating or drinking. Your loved one may not feel like eating, or he or she may no longer be able to swallow.
• Congested breathing. Noisy breathing is sometimes called the “death rattle.” As secretions from the lungs build up, your loved one may no longer be able to cough up these secretions. Eventually the secretions will dry up because your loved one’s body may become dehydrated after he or she stops eating and drinking. Medications can control congestion if your loved one feels uncomfortable.
• Irregular breathing. Breathing patterns may change in depth and rate. Your loved one may also stop breathing for several seconds at a time. Keep in mind that your loved one generally isn’t aware of these changes.
• Discolored urine. If your loved one stops taking in liquids, there will be less urine and it will be darker in color.
• Incontinence. As muscles that control bowel movements and urination relax, your loved one may experience incontinence.
• Blurred vision. His or her eyes may appear glassy and unfocused.
• Limited ability to communicate. Your loved one may lose the ability to speak. He or she most likely can still hear you.
• Confusion and agitation. This can be subtle or pronounced, involving jerking motions, hallucinations or delirium.

Work with your loved one’s doctors and nurses to make death as symptom-free as possible. Many signs and symptoms of imminent death can be treated, such as pain, anxiety, shortness of breath and delirium. While these treatments won’t stop your loved one from dying, they can make the process easier for both of you. Report any signs and symptoms that you are unsure of and don’t hesitate to ask questions if you’re unsure of what’s going on.

Even in a coma, your loved one may still hear you. Though he or she might be unable to speak or might seem asleep, continue talking in a soothing voice. Reassure your loved one that you’ll stay nearby. Hold or massage your loved one’s hands or feet, or stroke his or her hair.

In the last few days of life, consider what your loved one would want. Was he or she someone who enjoyed having lots of friends and family around? Perhaps you could invite family over to sit with your loved one to share stories and reminisce. If your loved one was a solitary person who enjoyed quiet time alone, perhaps that would make him or her most comfortable.

The final surge of energy

Often when people are dying, they will reach a period of time when it seems they’re getting better. Your loved one may wake up and may be able to communicate with you. These surges can last for a few hours to a few days. Though it can be confusing for you to see your loved one with renewed vitality, keep in mind that this is a normal part of the dying process, and your loved one may not actually be getting better. The final surge of energy is often a good time to gather your family and close friends to say final goodbyes.

Keeping vigil

For many families, keeping vigil near the dying loved one’s bed is an important show of support and love for the dying person. Whether you do this depends on your own customs and beliefs. If you decide to keep vigil, continue speaking to your loved one. Express your love for him or her, but also let your loved one know that it’s all right to let go. When keeping vigil, understand that some people prefer to die alone. People who were independent or private in life may choose the same in death. Don’t hesitate to step away from your loved one’s bedside from time to time to allow for this.

You’ve decided your aging parents can no longer live on their own. You worry about their safety navigating the stairs in their home, and you have doubts as to their ability to take good care of themselves. If it’s time to seek help for your parents in carrying out their daily activities, you have plenty of choices for long term care.Sorting through the long term care choices and deciding what’s best for your parents can be overwhelming. Here, Kevin Fleming, M.D., a geriatrician at Mayo Clinic, Rochester, Minn., shares his observations, concerns and advice.

What are the various types of long term care available?

You have many options when it comes to long term care. Nursing homes and assisted-living facilities are the most common, but other choices include hospices, home health care, foster care and group-living situations, such as apartment buildings with information networks of caregivers.

How do you know when someone needs long term care?

If they’re living on their own and a physical or mental condition interferes with their ability to perform daily tasks, they need long term care. When you or someone in your family recognizes that your loved one’s needs are going unmet or expresses concern for your loved one’s safety or well-being, that’s when getting help becomes an issue.

It can start with help in the home, which may or may not include medical assistance. Or the responsibility may fall to a particular family member. But when your loved one’s needs become more complex, you might have to hire a caregiver, and that’s particularly difficult when you live far away. Overall, concern for safety is probably the biggest reason to change your loved one’s living situation and consider long term care.

What does assisted living entail?

Services range from places that offer little more than a supervisor to check in each morning, to places that offer help with taking medicines, bathing and getting dressed. Some assisted-living facilities specialize in helping people with specific diseases, such as Alzheimer’s.

The range of services offered by various facilities is tremendous, and the cost can vary dramatically. Quality of care and staffing levels also can differ significantly among assisted-living facilities, as regulations are different from state to state.

The number of assisted-living facilities has grown the same way nursing homes once did. Not surprisingly, care problems once found exclusively in nursing homes are now occurring at assisted-living facilities.

Who needs to be in a nursing home?

People need nursing home care for two reasons. One is for rehabilitation for someone who, for example, breaks a hip. The other is for long term care. Traditionally that has been for people with severe dementia and problems caring for themselves.

How do you choose a nursing home?

Judging a nursing home is best done by visiting it first. Walk through it. If the place makes you nervous, leave. Trust your gut feeling. Is it clean? Does it smell? Observe those who live there. Do the residents look clean and healthy? Do they seem happy? What do their rooms look like? Select a facility that feels more like a home than an institution.

You’re your own best judge of whether a nursing home will provide good care. For example, inevitably when you enter a nursing home, someone is yelling. What does the staff do about it? Is the facility understaffed? Is the staff short-tempered and short on caregiving? If so, keep looking.

When you walk through a nursing home, what are some red flags to watch for?

How are you treated? If they’re so short-staffed that they forget you’re waiting for a tour, they might forget about your mom’s medications. How do the employees speak to you? Are people being handled in a humane manner?

What other tools are available for choosing a nursing home?

The federal government uses surveys to police nursing homes. You can look up the results using the Nursing Home Compare tool on the Medicare Web site. It’s best to compare facilities within a region to one another. This gives you the best view of what’s going on with nursing homes in your area.

Keep in mind that the data are often old, and the types of information you can gather are limited. Also, if you don’t know how to interpret the information, you may end up thinking you wouldn’t set foot in any nursing home. Over time every facility is going to have a deficiency. Learn how to interpret which deficiencies are minor and acceptable versus those that are life-threatening. The government can legislate a lot of things about nursing homes, but it can’t legislate caring.

Books on choosing a nursing home are available, but most treat it like buying a car. They don’t take into account the human element.

What’s the best way to ensure your parents get good care?

If your attitude is that no one had better make a mistake with your mom, take her home. No one will care for her like you. Many people believe being in a nursing home or assisted-living facility is bad. Some think they’ll get better service if they yell at the employees, spy on them or threaten to sue them. However, this approach guarantees failure. If you think negatively, you’ll get negative results.

Instead, get involved with your loved one’s care. Show up, help feed and wash her. The employees will be much more receptive to you.

If you’re considering long term care for your parents, don’t wait too long to start the discussions. If you wait until one of your parents is injured or sick, you might find yourself under pressure to make a hasty decision that everyone may later come to regret. Get to know your long term care options now and start the discussions with your parents early.

Types of long term care

Long term care ranges from some scheduled help around the house to 24-hour care in a nursing home. The point of long term care is to help your parents maintain as much of their independence as possible by helping them with the things they can’t do any more, whether it’s the weekly shopping or bathing and dressing. This independence is balanced with keeping your loved ones safe. Knowing that someone’s there to help can take stress off them and you, too.

Several levels of long term care exist. When choosing long term care for your parents, get to know what to expect from each level of care. This will help you pick the type of long term care that’s most appropriate.

• Home care. Home care includes medical care — usually nurses who come to your parents’ home if they can’t go out. But this category of long term care also includes help around the home. Home health aides or personal care service workers can visit daily to help your parents bathe and get dressed. These aides can also assist with housekeeping, meals and shopping. How often these services are needed is up to you and your parents.
• Adult care. Adult care programs are a type of long term care that offers social interaction and meals from one to five days a week, depending on the program. Some adult care programs provide transportation to and from the care center. Activities often include exercises, games, trips, art and music. Some adult care programs offer medical services, such as help taking medications or checking blood pressure.
• Senior housing. If your parents can no longer live in their house but they don’t need continuous long term care, you might consider senior housing or retirement housing. These are often rental apartments that have been adapted for seniors, including railings installed in the bathrooms and power outlets placed higher on the walls. Other services often offered by these senior housing communities include meals, transportation, housekeeping and activities.
• Assisted living. Consider assisted living if your parents need more help than senior housing offers, but they still want to remain as independent as possible. Assisted living staff can help your parents take their medications on schedule, help them with bathing and dressing, and provide some medical care. Some assisted living facilities also have on-site beauty shops and health services, such as a medical clinic.
• Nursing home. Nursing homes offer 24-hour nursing care if your parent is recovering from an illness or an injury. They also offer end-of-life care. Nursing home services are mostly for people who need more medical care than other long term care options can offer, such as wound care, rehabilitative therapy and help with respirators or ventilators. Personal care for bathing, dressing and going to the bathroom are also offered at nursing homes.
• Continuing-care retirement community (CCRC). CCRCs offer several levels of care in one setting. The idea is that your parents can stay in one place for the rest of their lives rather than moving each time they need a new level of care. Your parents might choose to move into a senior housing apartment while they’re still healthy and independent. When they need more help with daily activities, they can move to the assisted living area of the complex. For more care, they can go to the nursing home, which is also located in the building. You usually pay a fee or endowment to enter the CCRC, rather than paying monthly for rent and services.

How to choose the right long term care facility

With all the options available, selecting a long term care service can be overwhelming for you and your parents. Follow these steps to make the process easier:

• Decide what level of service your parents need. Will your parents need help with everyday chores, or will they need nursing care? This can help you decide what type of facilities to look into.
• Ask your parents what they would prefer. Would your parents prefer certain options, such as a smaller facility, a certain location or certain living arrangements, such as a single room?
• Consult with your parents’ doctors. You’ll need your parents’ permission to do this. Your parents’ doctors can also put you in touch with agencies that can help you identify your parents’ needs and make recommendations on their care.
• Decide how much you can afford. Will you be paying for the long term care, or will your parents be paying? Do you need facilities that will accept Medicare or Medicaid?
• Make a list of facilities within a half-hour’s drive of your home. Call the facilities closest to you first. Being close to your parents can make the transition to long term care easier for them and for you.
• Call to ask about prices, services and vacancy. Ask about monthly fees for care. Find out what services are available at the moment and if you’ll have to pay extra for them. If you have to find a long term care facility right away, it won’t do you any good if the facility has no vacancies. If you’re planning ahead, you might be able to put your parents on a waiting list.
• Visit. Schedule a tour of the facility for you and your parents. Gather first impressions: Does the facility seem safe and friendly? Does it smell OK? Is the temperature comfortable? Do the residents seem happy? Are there enough caregivers on staff? What are the rooms like?
• Ask questions. What are the rules? Can your parents choose when to get up and go to bed? When can you visit? What social activities are offered? How often will your parents receive care? Can your parents continue to see their personal doctors? How many people are on staff during the day and overnight? What type of training does the staff go through?
• Visit again. Observe staff members while they’re working. Talk with the residents. Visit at different times of the day. Make an unscheduled visit.

Also ask for advice from friends and relatives who have experience with long term care facilities in your area. Call the Better Business Bureau to find out if any complaints have been filed against the facility.

In the end, follow your instincts. Choose a place that treats your parents with respect and makes them feel comfortable. If the rooms are nice but the staff isn’t caring, don’t let your parents go to that facility.

Paying for long term care

Long term care can be expensive. In many cases, it will be up to you or your parents to pay out-of-pocket for the services. However, you do have other options, including:

• Long term care insurance. Your parents pay an annual premium for long term care insurance. In exchange, when they need care, the insurance provider pays a daily rate to the long term care facility. The daily rate differs, depending on the insurance policy. If your parents need long term care now, it might not be possible to get insurance. But if your parents are healthy and could need care in the future, you might want to suggest it to them.
• Medicaid. Medicaid is a joint state-federal program that helps your parents if they meet certain income requirements. Medicaid usually covers nursing home care only after an illness or injury. Whether Medicaid covers assisted living or a continuing-care retirement community depends on what state you live in. Medicaid coverage differs in each state, and some states might cover home care services.
• Medicare. This federal program is for people over age 65 and people with disabilities. It doesn’t cover assisted living, but in some cases it will cover home care services. Medicare covers nursing home care for up to 100 days, but your parents qualify only if they’ve recently been in the hospital for at least three days.

Deciding whether your parents qualify for any of these payments can be difficult. Discuss your options with your lawyer, accountant, a social worker or an area agency on aging. Also talk to your parents’ doctors, who might be able to connect you to community resources.

Discussing long term care with your parents

The idea of leaving their home or receiving in-home help for everyday activities can be distressing for your parents. That’s why it’ll be important for you to include them as much as possible in the selection of a long term care service. Try these tips for talking with your parents about long term care:

• Plan ahead. Waiting until your parents need long term care isn’t the best time to bring up the subject. If your parents are sick or injured, it may be difficult for them to participate in the selection of the facility.
• Listen to your parents’ concerns. Let your parents know you understand their concerns. Point out the benefits of long term care services. Remind your parents that their safety is your primary concern.
• Listen to your parents’ preferences. Include your parents in the decision making. Find out what kind of facility they would prefer.

It might not always be your decision whether your parents leave their own home. If they’re mentally competent, they have the right to choose where they want to live. Your parents’ doctors can decide whether they’re competent to make the decision to move.

Understand the anxiety your parents might have about leaving their home. Involve them as much as possible in the decision-making process to help them feel better about where they’ll be living.

Whether you’re having surgery and need help caring for yourself while you recover, or you have a chronic illness and need help caring for yourself long term, home care services may be an option.

More and more, health care providers are telling people who need continued care that the best place to receive that care is in the comfort of their own home. But to receive quality assistance, it’s important to understand the role of home care, how to find home care services and what questions to ask so that you hire the home care agency that’s right for you.

What is home care service?

Home care services provide you with a range of assistance, including:

• Skilled care. Conducted under the direction of your doctor, skilled care consists of services provided by health care professionals such as nurses and therapists. It can also include activities such as home dialysis, medical social work and physical therapy.
• Home support services. These services include tasks such as light housecleaning, running errands and preparing meals. These services may be all you need to allow you to continue living independently in your own home.
• Combination care. Some home care offers a combination of services provided by a team that includes a mix of doctors, social workers, registered nurses, dietitians, home health agency staff, visiting nurses, therapy specialists, home care aids, chore workers, clergy and others. The team carries out a detailed care plan tailored to meet your specific needs.

Who should consider home care service?

You may consider home care services if you need assistance caring for yourself because:

• You’re less able to care for yourself as you get older
• You have a disability
• You’re recovering from an illness, surgery or a hospital stay
• You’re living with a chronic illness
• You’ve been diagnosed with a terminal illness

In addition, home health care might be beneficial in helping you care for family members who may need help caring for themselves.

How can you find the home care service that’s right for you?

The first step to finding a home care service is to talk to your doctor about what services you’ll need. You may only require an occasional visit from a nurse to administer medication, or you may need more elaborate medical care.

Your nurse, doctor, hospital social worker or hospital discharge planner may be able to recommend several reputable home health care agencies. Your friends or family also may be able to provide some insight into which home care services provide the best care. Or you can check the Yellow Pages, under the heading “Home health care” or “Nurse.” Other sources include your state and county health department and area agencies on aging.

If you’re planning to receive financial assistance from the government or your insurance company, make sure the services you need are covered. Often home care is covered by insurance for a limited period of time.

What should you ask potential home care services?

To help you sort through your options, ask questions to help you evaluate which service is best for you. Consider:

• How long has the agency been in business?
• Is the agency certified by Medicare? If so, that means it meets federal requirements for health and safety. An agency’s Medicare survey report is public information. If the agency isn’t certified, ask why.
• Is the agency licensed by the state? Most states — but not all — require agencies to be licensed and reviewed regularly. These reviews may be available upon request and can be valuable for gauging the quality of an agency. To obtain a report, contact your state health department.
• Are the caregivers bonded and insured?
• What is the professional training of the nursing staff? Does the agency employ registered nurses and licensed practical nurses? Who supervises them?
• Who will be working in your home, and what are his or her specific duties?
• Does the agency provide literature explaining its services and fees?
• Is there a written plan that details services to be provided? Documents — including financial arrangements — should be given to you before service begins so that there’s no misunderstanding about the service to be provided.
• What procedures does the agency have for emergencies? Are caregivers available round-the-clock? Is someone on call?
• How does the agency protect client confidentiality?
• Can the agency provide references? Ask for a list of doctors, hospital discharge planners, former clients and family members of former clients who have experience with the agency.
• Is the agency approved or accepted by your health maintenance organization (HMO) or supplemental insurance?

Monitor your home care service

After you’ve found a home health care provider, it’s up to you to monitor the care you receive to make sure it’s what the doctor ordered. That’s where having a detailed, written care plan can help. Make sure the care you’re receiving follows what’s detailed in the plan. Record the number of visits from the agency. If you have any questions about the care you’re receiving, ask your doctor.

Your kids want you to move close to them. Or your doctor has reached retirement age. Or maybe you’ve got a new health insurance plan. Whatever the reason, after all these years with the same family doctor, you might discover that you have to find a new physician.

It might seem overwhelming at first — especially if you’ve come to trust your doctor and he or she understands you and your health history. Follow these steps and give yourself time to search for a new doctor who’s best for you.

Step 1: Make a list of what you expect from your new doctor

Think about what you like about your current doctor. Does he or she really seem to care when you talk about your concerns? Does your doctor explain things clearly in language you can understand? Is your doctor’s office conveniently located? Chances are you’ll want to have these same things with your new doctor.

Make a list of what you’re looking for and use it to evaluate new doctors. You’ll likely want a doctor who:

• Accepts your health insurance. Depending on your health insurance plan, you might be restricted to seeing only certain doctors in your area. If you see a doctor outside your plan, you may end up paying more. Can you afford to do that?
• Listens to your concerns. You probably want a doctor who will answer your questions and explain things clearly.
• Speaks your language. Difficulty understanding your doctor because of a language barrier could make it less likely that you’ll understand and follow through with your doctor’s instructions.
• Has an office in a convenient location. You need to be able to get to your appointments with minimal stress. Is the office easy to find? Is parking available on the premises? If you take the bus or subway, is a stop located nearby?

Other aspects might be important to you as well, including which hospital the doctor uses and whether or not the doctor works in a group practice with several other doctors.

Step 2: Decide which type of doctor you want

Deciding which type of doctor is best for you is another way you can narrow your choices. Types of doctors you might consider include:

• General practitioners. These doctors treat a wide variety of health problems. They don’t specialize in one area of medicine.
• Family practitioners. These doctors provide care for all ages. Your family might have used a family practitioner when your children were young. They’re a popular choice if you would like one doctor to become familiar with the health history of your entire family.
• General internists. Internists provide care for adults only, covering a wide spectrum of disorders.
• Specialists. Specialists are internists with additional training in a certain area. For example, a cardiologist is specially trained to treat heart problems.

General practitioners, family practitioners and general internists provide what’s called primary care. That is, they treat diseases and conditions but also advise you on how to prevent health problems. While some specialists also provide primary care, many prefer not to practice general medicine.

If, for example, you know you have heart problems and you want to see a cardiologist, first find a doctor who can provide your primary care. He or she can then refer you to a specialist.

Depending on your health insurance plan, you may be required to find a primary care doctor first. Other plans might let you choose a specialist without first seeing a primary care doctor.

Step 3: Ask around for advice

Talk to friends and family about doctors they recommend. Perhaps your current doctor can even make some recommendations. Nurses in your doctor’s office or at your local hospital might be able to offer recommendations, since they often work with several doctors. You might also consult:

• A local hospital you respect. If you’ve heard that a particular clinic or hospital in your town is good, you might want to call that hospital’s referral service and ask for more information about the doctors available to see you.
• Local, county or state medical societies. Networks of doctors in your area might have referral services to assist you with your search. Check your local telephone directory.
• Medical organizations. The American Medical Association (AMA) is a national organization that allows you to search listings by name or specialty. Some organizations have local chapters that can supply you with the names of specialists in your area. Medicare operates an online directory of doctors on its Web site. You can search by location and the doctor’s specialty.

You might also be interested in checking your new doctor’s credentials online. Administrators in Medicine, the national organization of state medical and osteopathic board executive directors, lists state Web sites that give such information, though not all states list doctors’ credentials online. Depending on the information available from your state, you might be able to find out if the doctor is currently licensed to practice medicine and whether or not any disciplinary action has been taken against the doctor.

Step 4: Call your selected doctors’ offices

Once you’ve made your list of preferences and decided what type of doctor you’d like, call doctors’ offices in your area and ask questions. You may want to ask about:

• Whether the doctor accepts your health insurance
• The doctor’s education and training
• How long the wait is for an appointment
• Whether the office will process medical claims for you or whether you’ll need to do that yourself
• The doctor’s experience with any chronic health conditions you might have
• Who will see you or answer your questions when the doctor is unavailable
• Whether the doctor works with other health care professionals, such as nurse practitioners and physician’s assistants, and how often you’ll see these professionals rather than the doctor

Ask any other questions that will help you narrow your choice of doctors. Responses to your questions might also give you an idea of how friendly or stressed out the office staff members are.

Step 5: Make an appointment to talk to the doctor

You might have gotten enough information over the phone to make your decision. Or you might want to make an appointment to interview the doctor to see how well you communicate with each other. Here you can ask more about the doctor’s experience and about office policies. Keep in mind that the doctor might charge you for his or her time, and your health insurance may not pay for the appointment.

Step 6: Transfer your medical information

Once you’ve selected a new doctor, talk with your current doctor about getting your medical records in order. With your permission, your current doctor can send your files to your new doctor. You might also ask for copies of your medical records for your own reference. Your current doctor may also be willing to fill your new doctor in on your chronic health problems. But don’t wait until the last minute. Give your current doctor enough time to prepare your files to ensure a smooth transition to your new doctor.

Finding a new doctor can seem overwhelming. But following a series of simple steps can make finding a new doctor much easier — and offer a greater level of satisfaction when you turn to your new doctor for medical advice in the future.

If your aging parents were to have a medical emergency, could you provide the vital information doctors would need to care for them? Do you know the names of your aging parents’ doctors? Is your mom taking any medications? Has your dad ever had any surgery?

If you’re like most people, you probably don’t know the answers to some of these questions about your aging parents. It only takes a few minutes to collect and write down this vital information. And it can save precious time in an emergency.

“Sometimes a parent isn’t able to give medical information when an emergency arises, so emergency medical personnel must rely on the adult children or a spouse for that information,” says Paul Takahashi, M.D., a specialist in geriatrics at Mayo Clinic, Rochester, Minn. “These are things you should know. Just as you fill out those emergency cards for your kids in school, you should have similar information available about your parents.”

Below — in order of importance — is a list of 10 things you need to know about your aging parents’ health.

1. Names of doctors. If you don’t know anything else, this is probably the most important piece of information. Why? Chances are good that your aging parents’ doctors can provide much of the rest of the information needed as well as more details about your parents’ specific health histories.
2. Birth date. Often medical records and insurance information are cataloged according to birth date. This can improve communication in an emergency or a crisis.
3. List of allergies. This is especially important if one of your aging parents is allergic to medication — penicillin, for example.
4. Advance directives. An advance directive is a legal document that outlines a person’s decisions about his or her health care, such as whether or not resuscitation efforts should be made and the use of life-support machines.
5. Major medical problems. This includes such diseases as diabetes or heart disease.
6. List of medications. It’s especially important that a doctor know if your parent uses blood thinners.
7. Religious beliefs. This is particularly important in case blood transfusions are needed.
8. Insurance information. Know the name of your parents’ health insurance provider and their policy numbers.
9. Prior surgery. List past medical procedures, such as cardiac bypass surgery.
10. Lifestyle information. Do your parents drink alcohol or use tobacco?

To help you care for your aging parents, fill out this downloadable emergency medical information form and keep it with you in your wallet or purse.

The death of a loved one is heart-wrenching and painful. But when the death is because of suicide, those left behind face even more difficult challenges.

Overwhelming emotions can leave you reeling. It may seem like your support system has vanished. And you may be consumed by guilt, wondering if there’s something you could have done to prevent your loved one’s death.

Bereavement after a loved one has taken their own life is often more complicated, intense and prolonged than it is with a death from natural causes. Although you may never fully recover and always feel a loss, you can learn how to cope better and eventually move forward in a way that’s healthy.

Brace for powerful emotions

It’s common for a wave of powerful emotions to wash over you when you first learn of a loved one’s death by suicide.

The immediate emotional response often includes:

• Shock. Disbelief and emotional numbness may take hold. It’s hard to accept a sudden and traumatic death, even if it may have been preceded by suicidal behavior or talk. You may think that this couldn’t have happened, that it’s not real, or that it’s only a nightmare and when you wake up, things will be OK.
• Confusion. You may not understand why your loved one died this way. Some people who take their own life don’t offer any indications that they’re considering suicide, so you may find it hard to reconcile the person you knew with the actions they took.
• Anger. It’s natural to feel anger about many different things after a suicide. People who were in contact with your loved one near the time of the suicide — doctors, police, emergency workers, friends or family — can become objects of your anger or rage. You may feel they let your loved one down, missed clues about suicidal intentions or could have prevented the death. You may direct your anger at yourself, too. And you may also become angry with your loved one, feeling cheated, abandoned or left with a legacy of suffering and irreparable grief.
• Despair. Sadness, depression, a sense of defeat or hopelessness can grip you. You may even consider suicide yourself.
• Grief. Sorrow and anguish run deep as you mourn the loss of your loved one’s life, and mourn for yourself, as well.
• Guilt. Survivors often initially think they could have done something to prevent a suicide. You may replay “what-if” and “if-only” scenarios in your mind, blaming yourself for their death. You may also feel guilty about your interactions with your loved one, regretting an angry phone call, long-ago childhood teasing or postponed visits. You may also feel embarrassed and ashamed that a loved one has committed suicide.

Physical reactions after a suicide

Along with these emotions can come a variety of physical reactions to a suicide, including crying, screaming, outbursts and physical collapse. On the other hand, you may be so stunned and numb that you can’t cry or react at all.

You may experience intense reactions that resemble post-traumatic stress disorder (PTSD), either immediately or in the weeks or months afterward. These can include nightmares and flashbacks — especially if you witnessed the suicide or found your loved one. You may experience social withdrawal and avoid people and places that remind you of the death. You may picture your loved one’s last moments over and over as you search for answers or clues about the death.

It can take weeks or months for the intensity of these emotions and behavioral reactions to subside. And they may linger at low levels for years.

If you try to ignore your feelings, deny yourself the opportunity to mourn, or you don’t find the support you want, you may not improve, and other problems can develop. Survivors of suicide are more likely to develop depression, and families that don’t find healthy ways to cope can be torn apart by unresolved issues.

Seeking help and support after a suicide

If you’re being worn down by the physical and emotional aftermath of a loved one’s suicide, you may experience sleeping problems, loss of appetite, concentration difficulties, headaches, nausea, digestive complaints, exhaustion, lack of motivation and other ailments.

You may turn first to family, friends or support groups for comfort. Some bereavement groups are specifically intended for survivors of suicide.

Because stigma — perceived or actual — can accompany suicide or mental illness, you may find it easier to share your experiences with others in a support group who are struggling with the same issues. You’re less likely to feel shame, embarrassment or a need to hide the truth. You may benefit from the empathy, understanding and guidance that support groups offer. And you may find purpose or strength in reaching out to others trying to cope with their own losses.

But if the trauma of the death causes intense or unrelenting anguish or physical problems, consider asking your doctor or mental health professional for help, especially if you have thoughts of suicide yourself.

Psychotherapy or medications can help you cope. You may only need short-term treatment to get you through the worst of the crisis. Therapy can help even if the death was years ago. Family therapy with children or your spouse can help if normal functioning and interaction have been displaced by blame and isolation.

Healthy coping strategies after a suicide

A suicide can be devastating. These strategies can help you get through it in a way that safeguards your own mental and physical well-being:

• Keep in touch. Your inclination may be to withdraw into isolation. After all, it may seem easier than confronting painful emotions, reminders or situations. But the support of family, friends, spiritual leaders or your faith community can soothe your distress and even offer a healthy distraction.
• Share your story. Talking about your experience in the safe and comfortable environment of a support group first can make it easier to tell others about your loved one’s death later. You may initially struggle with what or how much to reveal. Do what’s comfortable for you. Many survivors of suicide find it easiest to be forthright and honest, simply stating that their loved one died by suicide. You may encounter people who don’t know what to say to you — they might not even mention your loved one’s name, for instance. Or they may seem to avoid you. But that’s usually because they don’t want to risk saying something inappropriate and wounding you further. Decide whether you want to take the initiative and share your feelings.
• Do what’s right for you. Grieve in your own way, not someone else’s. You may find it too painful to visit your loved one’s gravesite, for instance, while someone else may want to go every day.
• Be prepared for painful reminders. Birthdays, anniversaries, holidays and other occasions you normally would celebrate can become painful reminders of your loss. This is a normal reaction, so don’t chide yourself for being sad or mournful. If it helps, change or suspend family traditions that are too painful to continue.
• Don’t rush yourself. Losing someone to suicide is a tremendous blow, and healing must occur at its own pace. You may, for instance, want to take more time off work than a standard bereavement leave allows. And don’t be hurried by a friend’s expectations that it’s been “long enough.”
• Expect setbacks. Some days will be better than others. And some days, when you thought things were improving, you may find yourself overwhelmed by powerful emotions once again. The death of another loved one even years later may reawaken memories of the suicide, for example. But know that healing doesn’t often happen in a straight line. There’ll be bumps, and your coping strategies will help you get over them.

It’s OK to start enjoying your life again, to find laughter in funny movies or in your toddler’s antics. Pursuing hobbies, socializing and having fun aren’t a betrayal of your loved one’s memory. They’re a sign of your healing.

A future beyond your loved one’s suicide

In the aftermath of a loved one’s suicide, you may feel like you can’t go on, that you’ll never enjoy life again. In fact, you may never completely get over the loss. You may always wonder why it happened, and reminders may trigger painful feelings even years later.

But eventually, the intensity will fade. The tragedy of it won’t dominate your days or nights. Perhaps you’ll find meaning and purpose in activism, or you’ll begin recalling moments from happier times and smile to yourself. Understanding what you’re up against as you heal and adopting healthy coping strategies will help get you there.