Saying goodbye

Photo of a couple embracing (Comstock Images / Stockbyte / Thinkstock)

If you feel that you are losing strength and you might not have much time left, it can be a relief to start preparing to say goodbye to loved ones and talk to them about what is important to you. It can also be helpful to start thinking about medical care and support towards the end of your life.

Most women feel utter despair if their breast cancer gets worse and it is thought that they may not have much time left to live. But they may also experience feelings like depression, insecurity, anxiety or anger and aggression, all of which can come and go. For many women it is painful beyond description to no longer be able to realize the plans they had for their lives, see their children and grandchildren grow up, or grow old with their partner and friends. They may also feel like a burden to others as they enter their final phase of life.

Every woman experiences this situation differently. Some women feel the need to face the issue of death and saying goodbye, and want to talk about it. Others try to avoid thinking about the finite nature of their life, or feel torn. But there is no right or wrong way to go about it. The important thing is that you find a path that is right for you, and which fulfills your needs and wishes. The following considerations might help you find your own individual path while getting the support you need.

If you feel that you are losing strength and you might not have much time left, it can be a relief to start preparing to say goodbye to loved ones and talk to them about what is important to you. Everyone involved may need courage to talk about these issues. But doing so often fosters a special kind of closeness and bonding. You may feel more at ease and secure, and your loved ones will be comforted by the thought of being there for you and being close to you.

You might talk with them about whether being cared for at home is an option and if they feel able to do it, or whether being cared for in a hospice or a clinic would be the right option for you and those close to you. Your doctors can also offer advice when considering these options. Consulting voluntary workers or experts with experience in grief counseling and terminal care may help too.

What is grief?

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 peace and quiet time on their own.

Some women say that very tangible activities are important to them during their final phase of life. For instance, organizing personal things, 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.

How can I spend the time left with my loved ones?

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. Grieving together with their partner, family or other people close to them, and expressing hopes, concerns and wishes, are often important. It can be more difficult to say goodbye and let go if you feel that you are not allowed to talk about the time ahead of you and death, or if you are afraid to do so, or don't know what to say.

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. In this special situation it is sometimes easier to address unresolved conflicts and bring to light conflicts 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, psycho-oncological, psychotherapeutic or pastoral help can also make it easier to cope with this difficult situation.

How can I prepare my children?

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 cannot 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 can help to talk with them as honestly as possible about what might happen in the family after your death – and 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 beautiful, important, funny and painful moments you and your children shared together.

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.

Other ways of preparing

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 Justice (BMJ) provides basic information on these issues in Germany. This page also links to free downloads of templates and brochures.

If you want to manage your estate 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 is important to be aware 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 and to feel close to you that way. 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.

How can home care work out?

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 they will support one another.
  • intensive medical care and sufficient pain treatment are provided for. you are able to find the help you need from health care professionals other than your family doctor, for instance to provide 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 additional payments) 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. X 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 is 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 doing 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. Statutory health insurers pay for home nursing services and healthcare products if your doctor has prescribed them.

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.

Daytime or nighttime care is another option, particularly if your relatives work. 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.

Outpatient palliative care and hospice services

Specialized outpatient palliative care offers 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, which is a common request. 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 while 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 cannot provide all of your nursing or medical care. Instead, they focus on offering conversation, reading a book or as a silent companion, and can also take care of smaller chores or help accompany you to appointments. Talking with helpers who are experienced in palliative care can also provide relief to other family members and renew their strength.

How will I be cared for in the hospital or the hospice?

It is not always possible to have intensive nursing care at home, and not everybody wants to be cared for by their loved ones. 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 conversation during the final phase of life. 

Inpatient palliative care is offered by hospitals (palliative care units), hospices and nursing homes. Your doctors, the hospital’s social services department 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 in great discomfort receive intensive care for several days or weeks. The goal of the therapy is to relieve or limit disease-related suffering – usually aiming to discharge the person so they can go 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. Like hospices, palliative care units also offer pastoral and terminal care as a central part of their services, if this is desired.

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, usually working together with practice-based doctors. Talking things over with someone and activities like music therapy are also common. 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.

They make little use of medical technology and do not try to prolong life at any price. The treatment focuses on good pain management and other symptoms like nausea or breathing difficulties. A lot of importance 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 support themselves.

More information

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. It is a good idea to register early for hospice care because there are often waiting lists.

You can also 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).