Saying goodbye

Most people associate the word “grief” with the time after death. But grief is also felt for things that can no longer be attained: loss of a future, unachieved goals, unfulfilled wishes, or unresolved conflicts. Grieving means experiencing pain while at the same time recognizing what was and is important in life. People grieve in different ways. Some become withdrawn, others want to talk about things, and some experience grief both mentally and physically. Grief can help people to remember, to look back over their lives – and eventually make it easier to let go. After a certain time, some women find it a relief to accept their grief, to express their pain and to find a place for it in their lives. Others may feel the need to not only talk with close friends and relatives, but also to have some quiet time on their own.

Some women say that very tangible activities are important to them during their final phase of life. For instance, getting their personal things in order, finishing projects, planning and providing for their family, handing over tasks, writing a will and preparing the funeral. Some try to resolve troubling conflicts or fulfill longstanding wishes, and to spend valuable time together with their loved ones.

If breast cancer is no longer curable, the focus of your life shifts towards the remaining time with your family, friends and people who are particularly important to you.

Women are often concerned about having to leave their family and friends and not being able to see their children or grandchildren grow up. Many worry about how their family will cope with their death. It is often important to grieve together with your partner, family or other people close to you, as well as express hopes, concerns and wishes. It can be more difficult to say goodbye and let go if you feel that you aren't allowed to talk about the time ahead of you and death, or if you're afraid to do so.

In the light of the farewell to come, many people feel the need to settle issues with those close to them so they feel free to part in peace. This special situation sometimes makes it easier to address unresolved conflicts and bring to light problems within the family.

People react very differently to the challenge of talking about topics like death, saying goodbye, and life afterwards. External support can be very helpful for some people. Counseling, psychological or pastoral help can also make it easier to cope with this difficult situation.

Depending on the age of your children, you can talk as openly with them as possible and gently get them used to the idea of life without you. Young children can't grasp what death means, but they do sense that something is going to happen that will change their lives. They may react by feeling insecure, anxious or being clingy. It might help to show and tell them that you love them, and that your love will still be there for them after you are gone.

Older children usually understand that they will have to say goodbye. The feeling that you will “stay with them” is important for them too, though. It normally helps to talk with them as honestly as possible about what might happen in the family after your death – as well as about what your child imagines will happen, and what you hope for their future. But having the child make promises – for example to look after younger siblings or to accept a new partner for their father – can become a burden. They might feel guilty if it isn’t possible for them to keep a promise.

You could leave some personal things behind so your children can remember and find out who their mother was later on. For instance, you can write down or tell your life story – in letters, diaries, video and audio recordings. You might describe your own childhood, and write about good, important, funny and painful times you and your children shared together. You can also prepare letters for future events, such as their graduation from school, 18th birthday or wedding.

Children whose mothers died of cancer when they were still young say that it helped them a lot to have kept the memories their mothers had left them. They wanted to know about the things and people that meant something to their mother. They were grateful to have the names and addresses of friends and relatives they could share memories with later on. Things of personal value like jewelry, clothing, pictures, or favorite recipes were important and helpful. Many daughters become particularly interested in their mother's medical history and medical files as they grow older, often because they want to find out whether certain medical conditions might run in their family.

Taking care of "final matters" is important for many women. You can preserve something of yourself by organizing your personal matters and belongings, and by providing for your family. Making arrangements for the things that are important to you can help your loved ones grieve, remember you, and get on with the rest of their lives. This may also include jointly finding new ways to redistribute different tasks and roles.

The main thing is that you provide for yourself. It may make sense, for example, to put down in a living will what kind of medical care you want if a situation arises where you are no longer able to communicate. You can appoint a health care power of attorney (POA) to take care of important issues if you are no longer capable of doing so yourself. You can consult your doctor for advice about this. The German-language website of the German Federal Ministry of Health (BMG) provides basic information on these issues in Germany. This page also links to free downloads of forms and leaflets.

If you want to plan your inheritance and make other provisions for the time after your death, it is best to include the necessary information in your last will and testament. Another option is to rely on succession law and to trust that your heirs will arrive at an agreement themselves. But if you have specific ideas about who you want to leave certain personal belongings and financial assets to, a handwritten record is needed. It's important to know that unless you are married or live in a registered same-sex partnership, your partner will not be considered if he or she isn’t specifically included in your last will.

The easiest way to make out a will in Germany is a handwritten testament: you write down your last will by hand, giving the date and the place, and signing it with your full name. You can also get advice from a notary and have your testament recorded there. Notarial consultation makes sense if you want to arrange for donations before your death.

You can also describe what kind of funeral you would like to have. Some people plan their funeral very carefully, while others would rather leave the details up to their family. It can be helpful for your family to have your funeral the way you wanted it. Undertakers can give advice on the different types of funerals and the formalities to be considered. There is also a broad range of books available on funerals and wills.

Please note that much of the following information – particularly as it relates to insurance and specific healthcare services – describes the situation in Germany. You may find that things are different elsewhere.

Nowadays, outpatient services can provide the medical care you need if you want to spend the final phase of your life at home. It is important to talk with your loved ones about whether this is possible and whether they can imagine doing it. Intensive home care can only work out if:

• the relatives and friends who take over your care are prepared for and capable of dealing with the necessities of nursing care and terminal care, and if they will support one another.
• intensive medical care and sufficient pain treatment are provided for. Other than help from your family doctor, you may need oncological care, palliative care or pain management.
• professional nurses and/or volunteer helpers are available to offer practical and emotional support.
• your home is suitable – for example, if the bathroom can be easily accessed and a nursing bed can be put up.
• your statutory health insurer or long-term care insurer has agreed to cover the costs, and the financing of possible extra costs (such as copayments) has been settled.

Your family doctor and specialists can support you and your family in choosing an outpatient nursing, palliative or hospice service. Care support centers (Pflegestützpunkte) and your health insurer or long-term care insurer can advise you and your family on care level classification, applications and other long-term care insurance services. They can also give you information about nursing care services. If necessary, outpatient nurses can come to your home and advise you on how to adapt it so it is suitable for home nursing care, as well as what aids will be needed (a nursing bed, for example, or a walking aid). Because organizing these things can take a lot of time, it's a good idea to start thinking about them early on.

If nursing care is needed, your long-term care insurer covers a part of the costs of professional outpatient nursing care, or gives the patient a care allowance meant for the relatives providing the care. These two things can also be combined. Then the long-term care insurer covers some of the costs of outpatient nursing care, and at the same time pays a certain amount of care allowance. If your doctor has prescribed them, statutory health insurers pay for home nursing services as well as aids and devices.

In Germany, if you are about to be discharged from the hospital, the hospital social services department can support you and your family and organize the necessary measures. One possible option, for example, is transitional or short-term care to prepare for medical and nursing care at home.

Part-time inpatient care during the day or at night is another option. Temporary inpatient short-term care is possible if the relatives taking care of you are sick or go on vacation. For the costs to be completely or partly covered, though, your required level of care needs to be officially assessed and determined. Talk to your long-term care insurer for further information on this.

General palliative care is often organized by family doctors. The patient has generally known their family doctor for a number of years and feels comfortable with them. The doctor treats symptoms like pain and sleep problems, coordinates the treatment provided by other medical professionals, and refers the patient to other facilities if necessary.

In Germany, specialized outpatient palliative care services (spezialisierte ambulante Palliativversorgung, or SAPV) offer intensive outpatient medical and nursing palliative care. Their aim is to maintain and increase self-determination and quality of life in the last phase of life, and to make it possible for people to die at home. Many wish to do this. Palliative care teams are made up of medical, psychological and nursing staff. They specialize in pain management, can often be called on 24 hours a day, and cooperate closely with hospice services. SAPV is offered by statutory health insurers and must be prescribed by a doctor. It is suitable for home or hospice care, and can often be set up in advance when you are still in the hospital.

Outpatient hospice services in Germany are provided by specialized medical professionals and specially trained voluntary workers who give psychosocial support at home or in the hospital. Voluntary workers can’t do the jobs of nurses or doctors. Instead, they focus on offering conversation and companionship. They may do things like read a book, take care of smaller chores or accompany you to doctor's appointments. Talking with helpers who are experienced in palliative care can also provide relief to other family members and renew their strength.

It is not always possible to have intensive nursing care at home, and not everybody wants to be cared for by relatives. Some women prefer to leave their physical care to medical professionals and feel well looked after in facilities with 24-hour services. If loved ones can no longer provide the help needed, institutional care may be the right option. It allows more time for close contact and conversations during the final phase of life.

Inpatient palliative care is offered by hospitals (e.g. palliative care units or oncology wards), hospices and nursing homes. Some regions have day hospitals or day hospices that provide palliative care during the day. They are usually a part of inpatient facilities such as a hospital or hospice.

Your doctors, the hospital’s social services and your health insurer or long-term nursing care insurer can help you choose a suitable facility and organize the financial side of things.

Palliative care units are special hospital wards where people who are terminally ill and have severe symptoms receive intensive care for several days or weeks. The goal of the therapy is to relieve or limit the symptoms of the disease – usually aiming to discharge the person home or to a hospice. Unlike intensive care units, palliative care units do not focus on medical technology, but on care and attention. The rooms are usually furnished in a homely way, and it is often possible for friends and relatives to stay overnight.

A hospice is not a hospital, but a facility where people are accompanied and cared for during their final phase of life. Hospice teams are usually made up of medical, psychological and nursing staff. They generally work together with practice-based doctors. Activities like music therapy are commonly offered, as well as the opportunity to talk things over with someone. In a hospice, voluntary workers are always there for you and your loved ones, too. They have special training in terminal care, but can help you with everyday matters as well. You can also have pastoral care if you want to. Hospices are usually small, homely buildings.

Hospices make little use of medical technology, and don’t give treatment to prolong life at any price. The treatment focuses on good pain management and other symptoms like breathing difficulties and nausea. A lot of value is placed on providing compassionate care and attention.

Not only hospices, but most hospitals and palliative care units also welcome relatives and friends nowadays. If they want to, they can take part in their loved one’s care and support, and accept help themselves.

If you are living in Germany and need further information, the website of the Cancer Information Service (in German: Krebsinformationsdienst) provides a list of addresses and contacts for palliative care and hospices, as well as for home nursing. You will also find this information in the online guide to hospices and palliative care services, which is run by the German Association for Palliative Medicine (DGP). It is a good idea to register early for hospice care because there are often waiting lists.

For further information, you can consult the Independent Patient Counselling Service (UPD) in Germany (services in German, Turkish, and Russian), the German-language cancer information centers (Krebsberatungsstellen), or the free, German-language telephone helpline run by the Cancer Information Service (Krebsinformationsdienst).