Ambiguous Loss: Alzheimer's and Caregivers

Alzheimer's disease affects one in seven North Carolinians over the age of 65, or approximately 160,000 people, not to mention all the caregivers taking care of them. One thing that is often overlooked is the effects of caring for a loved one who is physically there, but often mentally not. Sometimes having the language to articulate the often competing feelings one has in a situation like this can help. Because three different people reached out to me in the span of one week about this very topic, I called Lisa Gwyther, MSW, LCSW, who founded the Duke (Alzheimers) Family Support Program, and has spent forty years helping families with Alzheimers. Ms. Gwyther refers to being in this emotional state as living with ambiguous loss. I recently asked her these questions by phone:

Loving or caring about a person who is still physically present but cannot think, remember or communicate in a relationship in the same way. It is a type of “disenfranchised grief,” meaning there is no community acknowledgement or recognition of how alone the person feels. There are no traditions, no organized support, recognition and no mourning rituals like there might be when someone dies. People living with dementia have lucid moments, good and bad days and families caring for them may feel on a roller coaster of emotions. A spouse may call you by name, ask for his real wife or call you by another family member’s name. Families object to referring to ambiguous loss as “anticipatory grief”-- because they say, “I am not anticipating anything. I am dealing with loss in the moment -- it is extremely painful and it is different from the loss I will experience when the person dies. There’s a real paradox in that families must learn to deal with missing the person as he or she was, while also developing a new relationship with that person, and maybe even secretly wishing for some closure or resolution. Families also struggle with feelings that they can never do enough to make the person they love feel better or more connected or secure – they can’t “fix it” for the person or themselves.

Are there stages to it?

I don’t think there are lock-step stages applicable to all. People feel changed forever by losing someone to a memory or thinking disorder. There are common feelings associated with ambiguous loss but each person’s journey is his/her own. Often there is anxiety, guilt, shame, disappointment, resentment and even anger at the person with dementia, others who should have come forward for support and even anger at themselves. Often there are feelings of loneliness, helplessness and an overwhelmingly sense of losing a shared history and relationship. You have a spouse but s/he is not the same. Many express a loss of identity as a husband or partner -- a loss of a couple identity.   You have a parent, but how do you feel like a daughter if your parent doesn't recognize you or calls you by an aunt’s name?

What can help the caregiver?

First, accepting that it is a paradox, that you can have two opposing feelings at the same time. It can be helpful to reflect on your sadness and regret, to acknowledge that it is understandable to feel this way—and that loss is the problem, not you. This situation is not your fault nor is it anything you or your family member would choose – it just is. Wise families decide to love what was in the relationship while creating a new relationship with what is possible today. There is no easy way through it. Expressive (journaling) and altruistic (research participation or advocacy) outlets are terribly important and may help boost resilience when you feel most fragile and vulnerable. If you have a treatable depression, treat it. If you have a treatable anxiety disorder, treat it. Mindfulness can be an important tool. It can help people manage chronic stress and also pay attention to the positive moments and celebrate them while noting the beauty in life that remains.

What are some good sources of information and support?

The Duke (Alzheimers) Family Support Program can be a great start. It doesn’t matter where you live or whether you are a Duke patient or employee. Support groups, like ours in Durham, are great, though you may have to try more than one for the best match. You may experience real support from a connection to just one other person who “gets it.” It may be the wife of another person in the same memory care unit or nursing home you regularly visit. Visit our website. Sign up for our free monthly e-newsletter listing events, support groups, tips, research findings, book reviews and other helpful information. I also recommend this free, downloadable booklet on ambiguous loss, published by the Alzheimer’s Society in Canada and “Loving Someone Who Has Dementia,” by Pauline Boss.

For additional support groups, visit Dementia Alliance of NC and Guiding Lights.