Someone you love is still here, and you are already grieving. You may be mourning the conversations that are no longer possible, the future you had pictured, or the person as they were a year ago. Then you may feel guilty for grieving at all while they are alive.
This kind of grief has a name, and it is common among people in your position. It is one of several kinds described in types of grief. This article looks at it from the point of view of caregivers and families.
What is anticipatory grief?
The National Cancer Institute defines anticipatory grief as "a grief reaction that occurs in anticipation of an impending loss," and says it includes many of the same symptoms as grief after a loss. So the sleeplessness, the tearfulness, the trouble thinking straight and the waves of sorrow can all arrive before the death does.
It is especially familiar to caregivers. NIH News in Health, a publication of the National Institutes of Health, explains that you may begin to feel the loss of your loved one even before their death, and that this is common among people who are long-term caregivers.
It is not universal, though. NCI reports that approximately 25% of patients with incurable cancer experience anticipatory grief. That figure is about patients themselves, not their families, but it makes a useful point: some people grieve ahead of time and some do not. Neither is a measure of love.
What is it like to grieve someone who is still here?
With dementia, the loss can stretch over years. The person is in the room, and yet the relationship you had with them keeps changing. Dr. Pauline Boss, who coined the term, calls this ambiguous loss. One of the two types she describes is "psychological absence with physical presence," and she gives Alzheimer's disease and other dementias as examples. In her account, ambiguous loss differs from ordinary loss because there is no certainty that the person will return to the way they used to be.
This is part of why it can be so hard to explain to other people. There has been no funeral and there are no sympathy cards. You are doing the daily work of care and grieving in the same hour. Some caregivers also describe moments of wishing it were over, followed by shame. Having thoughts like these does not mean you care less. The article on grieving a loss that is not a death says more about losses that other people do not see.
Does grieving now mean you will grieve less later?
Many people assume so, and feel blindsided when the death still hits hard. NCI addresses this directly: "There is not a fixed volume of grief to be experienced." Grieving beforehand does not draw down a supply. You may grieve during the illness and again, differently, afterward.
The reverse also holds. If you were too busy managing medications and appointments to feel much during the illness, that does not mean you did it wrong. Knowing a death is coming is not the same as being ready for it.
What can help while you are still caregiving?
Nothing removes this kind of grief, and the suggestions here are options, not a program. They are practical ideas, not research findings.
- Name it. Telling one person "I am grieving already" can ease the sense that you are being disloyal.
- Say what you want to say. If there are things you would like the person to hear, or to ask them, sooner is usually easier than later. If words are no longer possible, sitting together still counts.
- Accept specific help. A meal, a ride or two hours of someone else sitting with the person gives you room to rest or to cry.
- Keep one thing that is yours. A walk, a weekly call, a standing coffee. Caregiving can swallow every hour if you let it.
- Talk to others in the same position. A caregiver or grief group can make the experience less lonely. See the practice's list of grief support groups in the Boston area.
What bereavement support does hospice offer?
If the person is in hospice care, support for the family does not end with the death. Under federal rules, hospices must make bereavement services available to the family, and to others named in the bereavement plan of care, for up to one year after the patient dies. Individual programs may choose to offer more.
You may not need to be a hospice family to use some of these services. Care Dimensions, a hospice serving the North Shore and Greater Boston, states that its bereavement services are open to anyone in the community who is grieving, whether or not the person who died received hospice care. Its grief offerings are for Massachusetts residents only, and it can be reached at 855-774-5100 for details. Good Shepherd Community Care in Newton says its support groups are free and open to the community. Programs change, so check with each organization directly.
What about time off work in Massachusetts?
Massachusetts Paid Family and Medical Leave (PFML) includes family leave to care for a family member with a serious health condition. It helps to know in advance what happens to that leave when the person dies. According to the state's Department of Family and Medical Leave, if the person you are caring for dies during your family leave, your leave ending date must be adjusted, and you should contact the department's contact center at (833) 344-7365.
PFML itself has no bereavement benefit. The department says that if the loss has caused or worsened a physical or mental health condition, medical leave may be available if you are eligible and your health care provider certifies a serious health condition. It also suggests checking whether your employer has a bereavement leave policy. As of October 2026, Massachusetts has no general law requiring employers to provide bereavement leave. Whether you get it depends on your employer's policy or contract.
When might therapy be useful?
Most people who grieve, before or after a death, do not need therapy. Some want it anyway, because caregiving leaves little room to think about what is happening to them, or because this loss is stirring up an older one.
Anticipatory grief is one of the things Dr. Rabin works with in her grief and loss therapy practice in Brookline. For caregivers who cannot easily leave the house, she also offers online therapy to clients anywhere in Massachusetts. A free phone consultation of about 15 minutes is a low-pressure way to ask whether it would be a fit.
If you are having thoughts of wanting to die, call or text 988, or call 911 in an emergency.
Keep reading
Sources
- National Cancer Institute, Grief, Bereavement, and Coping With Loss (PDQ), Health Professional Version (2024)
- NIH News in Health, Coping With Grief: Life After Loss (2017)
- Pauline Boss, Ambiguous Loss: FAQ
- Electronic Code of Federal Regulations, 42 CFR 418.64, Condition of participation: Core services
- Care Dimensions, Grief Support Frequently Asked Questions
- Good Shepherd Community Care, Grief & Bereavement
- Massachusetts Department of Family and Medical Leave, Guidance for Families and Employers Following a Death During Paid Family and Medical Leave
- Massachusetts General Laws, Chapter 175M, Section 2
Last reviewed October 2026. This guide is general information, not medical advice or a diagnosis. If you are in crisis, call or text 988, or call 911 in an emergency.
