Managing ambiguous loss and grief

Grief

Grief has been identified as the “constant yet hidden companion” of dementia (Kenneth J. Doka). Caregivers often experience a continuous and profound sense of loss and subsequent grief as they live through the changes associated with the progression of the disease. You may be grieving the losses that are occurring in your own life as well as in the life of the person with dementia.

Grieving is an up and down process. In the earlier stages of the person's dementia, you may swing between despair and wild optimism that a cure will soon be found. You may even deny that anything is wrong with the person and try to suppress your feelings. Later, if you have accepted the situation, you may find that there are periods when you can cope well and make the best of things. At other times, you may feel overwhelmed by sadness or anger, or you may simply feel numb.

Feelings like these are a normal part of grieving, but if you experience them, it is important to realize that you may be under a great deal of stress and you may need to seek emotional support for yourself.

Tips for coping with grief

• Feel the pain. Allow yourself to really feel what you are feeling, no matter what that is. Denying your feelings only intensifies and prolongs the pain.
• Cry. Tears can be therapeutic. Let them cleanse and relieve the pain inside. Relieve tension through shouting or punching a cushion. However, make sure that the person with dementia is safe and out of earshot or you may distress her.
• Talk. Share the pain. It is important to talk about your feelings even at the most difficult times. Sharing grief will help diminish it. It can be helpful to talk to a person outside the family, such as a counsellor or trusted friend. Joining an Alzheimer Society support group gives you the opportunity to talk with others who are on a similar journey.
• Keep a journal. A journal is a private place where anything can be written including unfulfilled wishes, guilt, anger and any other thoughts and feelings. A journal is a place where you can explore your frustrations and express your thoughts and ideas without interruption.
• Consider your own needs. If you spend a lot of time with the person with dementia, taking regular breaks can keep you in touch with the outside world and raise your morale. Just relaxing with a cup of tea or having a good chat on the phone will help you recharge your batteries and cope with your emotions.
• Find comfort. Different people have different ways of finding comfort. For many there is comfort in rituals, such as prayer, meditation or other activities.
• Hold off. Tread carefully before making decisions. Thoroughly explore all options before making major steps. You may be unable to make important decisions at times.
• Be kind to yourself. Be patient with your feelings. Find a balance between the happy and sad person, the angry and peaceful, and the guilty and glad self. Have patience with yourself.
• Learn to laugh again. Rediscover your sense of humour. Watch a funny movie, read the comics, or spend time with a friend who makes you laugh. Finding joy in life can be one way of honouring the happy times you used to share with the person with dementia.

It is fairly common for people facing dementia to experience depression, but this should not be regarded as inevitable. Depression is treatable. Speak to your doctor if you are concerned about depression.

Sources: Alzheimer’s Society of UK; Alzheimer’s Australia; “Living with Grief – Alzheimer’s disease,” Hospice Foundation of America (2004)

Grieving in the final stages of dementia

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 can’t 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
• Guilt
• Sadness
• 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.

What is ambiguous loss?

"The word 'ambiguous' helped me understand what was going on. I'm still married to my wife. I love her, but I don't live with her. I've always been crazy about her and still am. She's looked after, but it is a huge loss for me. The ambiguity is exactly how I feel." – A caregiver in Toronto.

People with dementia are likely to experience feelings of loss and grief over their diagnosis and throughout the progression of disease, as their own abilities gradually change.

Family caregivers also experience and grieve the loss of their dreams and expected plans for the future, the loss of a confidant and a partner, the loss of shared roles and responsibilities, and the progressive losses in the life of the person with dementia. The ambiguous loss and grief that a caregiver may experience can make the caregiving experience even harder.

Ambiguous loss is different from the loss and grief of death because closure is not possible and your grief cannot be fully resolved while the person with dementia is alive. But this ambiguity and the mixed feelings that it can stir up are a common and expected experience for caregivers of people with dementia. Fortunately, understanding loss and grief can help to ease the effects of the disease.

More information and resources

• MyGrief.ca is an online resource to help you understand grief and work through some of the difficult issues you may be facing. This site was developed by a team of grief experts and people who have experienced significant loss in their own lives, to help people like you.
• If you're a healthcare provider, or work or volunteer with an organization that focuses on dementia, there is a version of this brochure for you: Supporting clients through ambiguous loss and grief: Strategies for healthcare providers.
• You can also watch this webinar on ambiguous grief and loss presented by BrainXchange.
• Use our checklist to help you live positively with ambiguous loss and grief.