When the person with dementia reaches the final stages, he may no longer be able to recognize you or communicate with you, which can be very painful. Although the person is still alive, you may still feel a sense of bereavement because you have lost the person he once was. You are aware that the relationship between you is almost over, yet you cannot mourn the person fully because he is still alive. At this time, you may find that just sitting together holding hands or placing an arm around the person may give you both comfort. It may also help to comfort you to remember that you did all you could.
Some caregivers of a person with dementia find that they have grieved the loss of the person for so long that they don’t have strong feelings of grief when the person dies. Others do experience a range of emotional reactions. These may include:
- Feeling numb
- Denial of the situation
- Shock and pain, even when death was expected
- Relief both for the person with dementia and for the caregiver
- Feelings of isolation
- A sense of lack of purpose
For some people, it is normal to go through these feelings for a long time. If you have been looking after someone with dementia, you may feel a huge void in your life when the person has gone. Even if you are coping well generally, you may still find there are times when you feel especially sad or upset. Celebrations and family events such as birthdays may be particularly hard, and you may need to lean on family and friends for support during these times. During the months following the person’s death, try to avoid making any major decisions, when you are still feeling shocked or vulnerable. Seek out your family physician if you need help with anxiety or depression.