Dementia and end-of-life care
Grief and loss
Grieving in the final stages of dementia
When the person with dementia reaches the final stages, they may no longer be able to recognize or communicate with you, which can be very painful. You are aware that the relationship between you is almost over, yet you can’t mourn the person fully because she/he is still alive. Recognizing your feelings and understanding the concept of ambiguous loss can help.
At this time, you may find that just sitting together holding hands or placing an arm around the person may give both of you comfort. It may also help to remember all that you have done to support the person.
Find ways to stay connected to the person with dementia as they are today, but also adapt to the losses in that relationship by maintaining and nurturing relationships with friends and family, and making new friends too.
Though it is often difficult, it is important to be realistic about how the disease will affect the person over time, and you need to plan for a life on your own after the person with dementia is gone.
Grief and loss after a person with dementia dies
Some caregivers of a person with dementia find that they have grieved the loss of the person for such a long time that they don’t have strong feelings of grief when the person dies. Others do experience a range of emotional reactions which may include feeling numb, denial of the situation, shock and pain, relief, guilt, sadness, feelings of isolation, or a sense of lack of purpose. If you have been caring for someone with dementia for years, you may feel a huge void in your life when the person is gone.
It is normal for some people to experience these feelings of grief for a long time. Even if you are generally coping well, you may find that there are times when you feel especially sad or upset, such as the first Christmas, birthday or Mother’s day without them.
During the months following the person’s death, try to avoid making any major decisions, when you are still feeling shocked or vulnerable. Speak to your family physician if you need help with anxiety or depression.
- Ambiguous loss and grief: A resource for individuals and families
- Our Grieving page includes tips for coping with grief and additional information on grieving in the final stages of dementia
- The Grief section on page 125 of A caregiver's guide: A handbook about end-of-life care provides more information on how grief can affect you physically, mentally, emotionally, spiritually and socially
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