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Anticipatory Grief / Grieving Before a Loss
Your Anticipatory Grief / Grieving Before a Loss Questions Answered
Our team of palliative care experts is ready to answer your questions about Anticipatory Grief / Grieving Before a Loss
It’s not surprising that we have trouble finding the best way to talk and think about death when we face it in our own lives. Few of us have gone through it or seen others go through it. Some general concepts can help people and families find the approach that suits them the best.
It’s important to remember that there’s no one right or wrong way to talk and think about death. Each family has its own culture and its own ways of doing things such as communicating, celebrating, arguing and grieving. As parents, you’ve learned what works best for your family and each of your children. Those instincts and experience are your best guide.
For example, you’ll need to decide whether you gather everyone, and talk all together, or whether you talk to each child separately. One child may need hours of gentle talk, with increasingly clear discussion. Another may be more comfortable with the subject than you are. Some families have learned that having everyone in the same room for anything isn’t a good idea. This is not the time to challenge that experience.
In any approach, let your children know that it’s good to talk about dying. Any point is a good one and anything is fair game. Let them know that you won’t be upset by their talk. Avoiding the truth with optimistic but plainly false statements usually shuts down conversation, as it tells your children that the subject is something you don’t want to talk about. Honesty is the best approach. Of course, there are different ways of being honest, with various degrees of gentleness and bluntness. If your children understand what you’re saying and are coping with it, then you can be less soft and clearer in your language.
At times, the person who is dying doesn’t want to burden the family, and so won’t talk about death. Similarly, a family member may avoid discussion for fear of taking away hope or causing depression. Each may believe that if the other wanted to talk then he or she would bring up the subject. It’s usually a huge relief when someone breaks the silence and conversation flows.
You may need to talk about specific treatment options or the lack of options. If your husband has decided not to pursue a potential treatment, your children may feel that their father is rejecting the pursuit of every possible moment on this earth. This sometimes feels like a personal rejection. Consider emphasizing that accepting death is not rejecting life, and is not rejecting them.
Even adult children need to feel important and special to their father. He may want to tell each how proud he is of him or her, and how that pride helps him in this very sad time. This is a gift he can give to each child. If he’s well enough, he may consider writing a journal for each one. Every time he thinks of something to say to each one, he can write it down. This can range from a single sentence about something in the past, or words of advice for the future. Such a journal gives children a sense of legacy, and a special reminder of their dad.
Often decisions need to be made about issues such as the approach to medical treatments, or whether their father wants care at home, in a hospital or hospice. These are sad and difficult topics, but it’s important to let your children know what their father wants, and it eases the responsibility they may feel for these difficult choices. The decisions can be formalized in a health care directive. The health care team can be part of developing a directive, as they have information on the various health care options.
A directive can also allow your husband to communicate his thoughts about dignity. Dignity is a very personal concept and means something different to everyone. It helps if your husband can describe what might threaten his dignity and what might preserve it. This lets the family and the health care team understand the best way to meet his needs.
It can be difficult to find meaning or purpose in someone’s dying. Yet, this time offers a very important opportunity to your children. It helps them learn about death and dying. This may be the last lesson a parent can pass on to children. It will be important for them, and teach them how to help their own children in the future.
Each person in your family has a unique relationship with your mother, so each of you will grieve her in a unique way. Also, each of you is unique in how you cope with stresses. These ways of coping apply to grief also.
Sometimes grieving starts before someone dies. This is known as anticipatory grief. It seems that your sister is going through this. She’s facing the added challenge of working through her grief while she’s also helping care for your mother. This experience may be overwhelming her, and it may be hard for you to watch her go through it.
Your sister’s anger is part of her grieving. Even if she’s irritable, impatient or openly hostile toward some of you, her feelings may not be directed at anyone in particular; sometimes it’s just safer to vent feelings with family members. Your sister may keep you at a distance and keep you from helping her. All of this may be easy to understand in theory, but it’s hard to accept emotionally. The best you can do is just be there for her, and be ready to talk with her when she’s ready.
Talking about feelings and what’s behind them can be therapeutic, but some people may be more comfortable talking to people outside the immediate family. Your sister may prefer to talk to a trusted friend or a spiritual care provider, who can be a valuable source of support.
Many communities have support groups, bereavement groups, or other resources that may be useful to members of your family. You may want to look for a social worker who can offer counseling to your sister or others in your family, or can help you find other useful support and resources.
This response is based on what we have learned from people who have gone down the road you are on now. Some things will fit for you and some things won't. The most important thing, in our view, is to know that there is no one right way to cope.
The news that someone has less than a year to live can be overwhelming for the person who is told it and for those close to him/her. It's hard to think about anything else. Everything in you wants to cry, “No!” Panic, sadness, anger, or helplessness may well up and overflow at almost any time. Nothing can be the same from this point on. Most of us at some level don't want to believe it, and we may deny or avoid the reality. This is our human way of protecting our self.
In addition to this common reaction, you and your husband may have very different ways of responding or coping. Some people are very practical and matter-of-fact, and approach things head on. Others may be immobilized and unable to look at the realities, or they need to do it in their own time. A person once said facing a terminal diagnosis is like looking at the sun, you can't do it steadily for a long period of time.
Once the initial shock sinks in, you start to see the realities of life again. You still have to deal with the ordinary things – meals, dishes, laundry, bills, shopping, repairs, and perhaps much more. You probably also have to look after lots of new things because of your husband’s illness – new areas of responsibility, arranging for the help he needs for medical and physical needs, making decisions about future care, updating wills, responding to concerned family members and friends. There seem to be too few hours in a day to do it all, and so much to learn in a short time. You cannot expect yourself to know everything you need to know at the start, nor to learn it all quickly at such a stressful time.
Don’t try to deal with it all at once. Talk with your husband, and perhaps others you trust, and decide what is most urgent. If you break the pressing challenges into smaller chunks they seem manageable. Plan for the future, but rather than focussing on future problems, take things one day at a time. Someone once said, "living in the present, takes on a whole new meaning" in these circumstances. Above all, be patient with yourself. You are learning a lot and doing a lot, much of it new, at a very stressful time.
No matter how many practical things call for attention now, the single most important thing during this time is to be attentive to your husband. Be as emotionally close to him as is comfortable for the two of you. Let him know you want to make the most of the time you still have together, and that you want to be as supportive as possible. You could say something like this: "I love and care about you, and do not like to see you going through this difficult situation. Please know that you are not alone and I am here for you whenever you need me.” Such words are reassuring, and leave the conversation open for discussions of struggles.
Communication is a big part of coping. Often we feel a need to protect one another by not discussing painful subjects. Yet, while it is important to respect each other's individual way of coping it can help to take a "we're in this together" approach, and talk openly about what is happening. Sometimes we may use a great deal of energy to hold back our feelings; if we can be open with each other, it sometimes actually frees up some energy to live better.
Regularly invite your husband to share his feelings about what is happening. Be prepared for them to vary wildly from day to day, even moment to moment. Make time for the two of you to talk about what is most important to each of you.
- Spend time reminiscing about the good times and bad times you’ve shared.
- Affirm and celebrate what you have created or built together.
- Talk openly about what you mean to each other.
- Discuss concerns each of you has about how you will cope after his death.
Your conversations and times together may not always be easy and may sometimes be upsetting. However, if you stay focussed on what you mean to each other in the midst of all that is happening, this can be a deeply satisfying time that also helps to prepare both of you for losing each other.
This Virtual Hospice article offers some tips on listening to and talking with someone facing death:
What Do I Say?
We've also learned from people that it is always possible to have hope. A big part of coping is redefining hope. We go from hoping for a cure to hoping for living longer, to hoping to be able to spend time together. You may find that this discussion of hope has ideas that apply to you:
How do we maintain hope when we can see that our father's condition is deteriorating?
The stress of caring for your husband and distress at the thought of your coming loss may affect your ability to cope and to help your husband. One of the most important ways you can help him is to take good care of yourself – you will not be able to help your husband cope with his progressing illness if you become ill or are overcome by exhaustion. Self care includes taking some time for yourself to do the things you enjoy. It may also help to talk about your feelings and concerns with someone you trust. It is especially important to know and accept that you cannot meet all of your husband’s needs by yourself - accept help from others who wish to be involved. For more information on caring for yourself see this Virtual Hospice article:
This handbook is an excellent resource for family caregivers and is available free of charge:
A Caregiver's Guide: A Handbook about End-of-Life Care
with you. Grief can occur before a death as well as after. People living with someone's terminal illness often experience what is called anticipatory grief. This kind of grief ahead of death can be confusing and painful. We sometimes don’t want to give in to our feelings of loss and we try to stay positive. Yet the feelings are there, and anticipatory grief may be a way in which we are being prepared for what lies ahead.
This article may help you understand the grieving process, including anticipatory grief.
You may want to check out the answer to this question from someone also dealing with grief:
My husband died suddenly about a year ago. I’m still having trouble sleeping and I just wish the pain would end. Can you die from a broken heart?
Finally we encourage you to seek out support along the way. It is important to have friends or family who accept you as you are and accompany you consistently through the ups and downs. Support can include information, help with care and other tasks, and someone to talk with, to share concerns and questions, and to feel heard. You could do this with a friend, family member, volunteer or professional counsellor. Counselling can help you process thoughts and feelings, alone or with your husband or family.
Also consider help from health care providers and volunteers. There are likely resources in your community available to you and your family. There may be a palliative care program, hospice palliative care association or grief support group in your area. Such organizations can usually point you to useful resources and helpful programs for patients and families, before and after the death of a loved one. You can also look for resources in our cross-Canada directory:
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PROGRAM AND SERVICE
This booklet provides a range of ideas for parents and carers so that they feel able to involve their children in what is happening. The book also includes some suggestions...