As he sits beside his wife, as he does every day when he comes to visit her, he tries to hold her hand. She pulls her hand away quickly and looks at him as if she has no idea who he is and how dare he touch her without her permission. She does, in fact, have no recollection of this man even though she has been married to him for 43 years. He retracts his hand and lowers his head. The same thing happened yesterday and will happen again tomorrow, though he hopes for a different result.
How is it to grieve someone that is right beside you? Is that possible? Yes. Most caregivers don’t recognize that feelings of anger, sadness, longing for the past, and guilt are a type of grief. But this is exactly that, and it has a name: ambiguous loss.
Ambiguous loss happens when your person is physically there, but their emotional state and cognitive functions are not as they were before or as you remember them to be. This type of loss is not just reserved for those caring for someone with dementia, but is also for those suffering with addiction, traumatic brain injuries (TBI) or mental illnesses such as depression or schizophrenia.
Recognizing that your feelings are valid and normal and are shared by others can bring great comfort. It’s okay to mourn the person that you have lost as you look at the same face with the love you have always had. This face has been with you through challenges and beautiful experiences alike, and that face is present in many of your own memories. This face may be the one that you saw in your dreams for the future as you wished to travel together, or marvel at the grandchildren to come, or even finally move to that place that you’ve always talked about. This person may have been your greatest love, the one you always wanted to tell your stories and news to first. The one you came to whenever you needed advice when you were at a loss because they always knew what was best for you. Multiple losses may come with each passing day as your person seems to fade further and further away from you.
This may all feel very bleak and dark but there can be some light shining through the cracks. Knowing that what you are feeling is called ambiguous loss and making sense of what you feel can be very healing. Finding those that understand what you are going through and who share similar stories and challenges can help release a very heavy weight.
This post was written in honour of World Alzheimer's Day. If you are a caregiver interested in joining HHA's next virtual Caregivers Death Café on Tuesday, October 18th at 7:00PM, you can register to attend here.
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Lisa Bonneville is one of the facilitators for HHA’s Death Doula certification training weekend. She is also a bereavement counsellor, end of life doula, and dying and death educator with over a decade of experience in the field of death care.