Preparing for ambiguous loss and grief involving a close family member with Alzheimer’s disease

What is ambiguous loss and grief?

The Alzheimer Society of Canada describes ambiguous loss and grief as a “type of loss you feel when a person with dementia is physically here, but may not be mentally or emotionally present in the same way as before.”

Caregivers who care for someone with Alzheimer’s disease are likely to be affected by this form of grief.

This may well be the case for you. The person you are caring for has not died, but is gradually losing mental capacity. As a result, you feel overwhelmed by emotions, grief and even guilt: you are experiencing a form of ambiguous loss and grief.

What to mourn for?

“Ambiguous loss and grief is different than the grief that follows sudden death,” the Alzheimer Society of Canada explains.

The person you are providing support to is still there. They still share your life and your daily routine. You feel an emotional ambivalence that oscillates between guilt, anger, frustration, sorrow and helplessness. All of this is experienced intensely, both by the caregiver and by the person affected. You are experiencing a form of ambiguous loss and grief.

“Ambiguous loss complicates grief,” writes the Alzheimer Society of Canada in its document written specifically for people with Alzheimer’s or a similar disease and their families.

It is then a question of mourning:

• the reciprocity of the relationship with the person experiencing cognitive impairment
• the intimate, affective or filial relationship
• the goals you had together;
• the projects you had in common

Ambiguous loss and grief, a series of steps

Recognizing ambiguous loss and grief

Knowing what ambiguous loss and grief is a first step toward recognizing it when you experience it, which makes it easier to process. Reading about it can help you better cope with it if it occurs.

Learning more about the disease is also an important step. When Alzheimer’s disease is diagnosed, it is important to:

• learn about the different symptoms and progression of the disease;
• maintain good communication with the person you are supporting as well as with the family members, to understand the needs and expectations of everyone;
• learn a few tips to help you get over the various challenges.

Ambiguous grief is grief. Allow yourself to recognize this and begin this process.

Living with grief

Allow yourself:

• the right to experience this ambiguous loss and grief;
• the necessary adaptation that you must make in the face of the loss of the reciprocal relationship with the person affected;
• time to understand how grief and mourning affect you, slow you down or even prevent you from performing your role as a caregiver and in providing support;
• time to understand how this same ambiguous loss and grief affects the person with Alzheimer’s disease.

Overcoming grief

Below are a few tips to help you accept this process and deal with your ambiguous loss and grief:

• Ask for support from family members, friends or colleagues whom you trust and feel comfortable with sharing what you are going through.
• Verbalize. Since this is a misunderstood form of grief, don’t be afraid to describe what ambiguous loss and grief is and what you need.
• Get help from health professionals, health and social service providers or community organizations. Support groups will help you to express what you are experiencing and to learn from others who are going through similar experiences. This support will allow you to normalize your experience, and you will gradually begin to accept your feelings and the disease.
• Take time for yourself. Look for things that make you feel good and don’t be afraid to pursue them. For example, painting, writing, music and sports are ways to express yourself while taking care of yourself. You could also go for a walk, read or meditate, in short, take some time for yourself.
• Info-aidant is a professional, confidential and free listening, information and referral service. Contact can be made by telephone at 1 855 852-7784 every day from 8 a.m. to 8 p.m. and by e-mail.

Living with ambiguous loss and grief

Some caregivers experience their grief by expressing themselves emotionally. Others are more action-oriented, by searching for information and finding solutions. Still others opt for a combination of both approaches.

Ambiguous loss and grief are not specific to Alzheimer’s disease. Other caregivers of those with a neurodegenerative disease (Parkinson’s, ALS, multiple sclerosis, etc.), or other diseases, are likely to experience all or part of this process.

The French language may provide a clue with their expression “work through grief.”

Inventing our ambiguous loss and grief. Work through it... as best we can.

Sharing knowledge and experiences

Our website provides information for you, your loved ones, and those around you to:

• interact with a loved one with Alzheimer’s disease;
• manage the feeling of guilt;
• identify practical tips for caregivers of people with a degenerative disease such as Alzheimer’s disease and other neurocognitive disorders, like ALS or Parkinson’s disease;
• access a resource directory, throughout Quebec and for all caregivers, such as in-home assistance or respite services;
• take administrative steps for caregiver benefits or home support services;
• share your experience on our social networks, discuss with others in a caring community.