Death and bereavement
Coping with caring
When my mother died after ten years of Alzheimer’s disease, she was very different from her real self. In a way, I felt I started to lose her long before she actually passed on. But she still left a huge gap in my life. It’s now two years since her death, and I have managed to pick up the pieces of my own life again. Even though I will always miss her, the worst feelings are past now and I find I can remember her as she used to be before she got ill.
The process of bereavement is different for people with dementia than it is for others. This is because with dementia, carers know in advance that the person they are caring for has a terminal disease and they experience various losses throughout the course of the disease (such as the loss of the person’s personality and character, loss of their abilities and of plans for a future together). In the final stages of the disease when the person can no longer recognise you, you may feel rejected or that you should be mourning them, even though they are still alive. Following their death you may experience conflicting emotions such as shock, relief and sadness. However, according to many people who have cared for someone with dementia and suffered their loss, you will eventually come to terms with the death of your loved one. In time, the memories of the disease will become less vivid and you will remember how the person was before the disease. Nevertheless, in the period following their death, this may seem extremely unlikely to you.
Donating brain tissue after the person’s death can help researchers to advance their knowledge about the causes and potential treatment of the disease. Although preparations have to be made well in advance of the person’s death, it is something that the family have to deal with at a time of great sadness and recent bereavement. For this reason, an explanation is given at the end of this chapter of what is involved.
How to cope with death and bereavement
Your feelings and emotions
Due to the very nature of the disease, you may experience a range of conflicting emotions both before and after the death of the person with dementia. It is important that you recognise and accept how you feel without being critical or harsh on yourself. Even though you have always been aware it is a terminal disease, when the time comes for the person with dementia to pass away, you may be shocked and experience a kind of numb feeling. On the other hand, you may feel relieved that their suffering is finally over. Some people are under the impression that they are not really affected by the person’s death or that they have managed to deal with it.
Following your initial reaction and response to the death of the person with dementia, your emotions may change. You may experience feelings of guilt, anger, isolation and depression. You may feel unable to accept and come to terms with the person’s death, even if at the beginning you seemed to be coping well on the surface. The intensity of these emotions can leave you emotionally drained. It is therefore important not to ignore them, but rather to acknowledge them and let them pass. In this way, you will be able to grieve their loss and carry on with your life, knowing that you did your best.
Keep in contact with family, friends and other carers
Speaking to people who know and understand you will help prevent you from churning over depressive thoughts and doubts. After the death of the person with dementia, you may, for example, start to question yourself about whether you could have done more and think about the time(s) when you lost your temper or treated the person badly. You may be troubled by aspects of your relationship with the person before they became ill or feel guilty about having allowed them to be cared for in a hospital (even though it was the best thing to do at the time). Through talking and sharing your sorrow, you may be able to release some of the tension you are feeling which may have been building up over the years and start to see things more in perspective, remembering the good times rather than blaming yourself.
If you cannot confide in friends and family, you might be able to talk to someone else who could provide you with emotional support and perhaps a shoulder to cry on. The Alzheimer’s disease organisation (see section 5 for details) might be able to help by putting you in contact with other carers or if you are religious, someone from your religious organisation might be pleased to visit you.
Pay attention to your physical condition and state of mind
During the process of grieving, people have a higher risk of becoming ill or depressed. It is therefore important that you look after your health and that you contact a doctor should you feel ill or depressed. Be careful not to confuse normal sadness over the person’s death with depression (please see the chapter on feeling depressed/having depression in section 3 for more details) as depression is a medical condition, which your doctor will be able to treat.
Last Updated: Tuesday 11 August 2009