Alzheimer's Caregiver: Grief and Loss - Alzheimer's Patient Terminal Stage

Towards the end

In the final stages of dementia the person may be unable to recognize you or communicate with you. This can be very painful. Although the relationship seems very nearly over, you are unable to mourn fully because the person is still alive.

Holding the person's hand or sitting with your arm around them may be comforting for both of you. It might also help you to recognize that you have done all that you could.

When the caregiver's person dies

Some people find that they grieve so much during the course of the illness that they have no strong feelings left when the person dies. Other people experience a range of overwhelming reactions at different times. These may include:

• Numbness, as though their feelings are frozen
• Inability to accept the situation
• Shock and pain, even if the death has been expected for a long time
• Relief, both for the person with dementia and themselves
• Anger and resentment about what has happened
• Guilt over some small incident which happened in the past
• Sadness
• Feelings of isolation.

Caregivers should be prepared for the fact that it may take them a long time to come to terms with the person's death. Caring will probably have been a full-time job for a long time and when it ends it will leave a void.

• Try to avoid making any major decisions in the early months if you are still feeling shocked vulnerable
• Accept that, even though you may generally be coping, there may be times when you feel particularly sad or upset
• Events such as anniversaries or birthdays are often distressing. If so, ask friends and family for support
• Stay in close touch with your doctor or therapist. You are likely to be more vulnerable to physical illness as well as to anxiety or depression following a bereavement.

Getting back on your feet

Although you may feel very tired after someone dies or goes into long-term care, the time will come when you are ready to re-establish your own life and move forward.

You may feel very unconfident at first and find it difficult to take decisions, make polite conversation or cope with social gatherings. But don't give up. Your confidence will gradually return. Take things slowly and make sure that you have plenty of support from family and friends, professionals and other former caregivers.

Sources:

• Alzheimer's Society UK - Carer's advice sheet 507