Loss & bereavement

When the person with dementia reaches the final stages, they may no longer be able to recognise 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 they once were.  You are aware that the relationship between you is coming to an end, yet you cannot mourn the person fully because they are 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 people who care for someone with dementia find that they have grieved the loss of the person for so long that they do not 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
  • Guilt
  • Sadness
  • Feelings of isolation
  • A sense of lack of purpose.

Some people find they experience 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.  Speak to your GP if you need help with anxiety or depression.

Useful organisations

Cruse Bereavement Care 

Dying Matters

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