My friend Jack texted me the link to the same article three times in two days — his brain addled by a combination of lack of sleep and the stress of constant concern. He has some help in caring for his wife of 53 years who has advancing Alzheimer’s: daycare three times a week, an occasional paid caregiver for social outings, a dutiful daughter who recently relocated just a mile away from the family home.

But Jack continues to be the main caregiver: getting her dressed each day, reminding her where the bathroom is in the house they’ve shared for nearly half a century, coaxing and directing her up and down stairs — which have become her newest challenge.

The link in all of the messages Jack sent was to an article describing the stress of caregiving and the reality of “ambiguous loss.”

His first message was: “This pretty much describes me.” The second was: “I’m not sure if I sent this. It describes the situation I’m in very well.” The third one was simply: “I am so sad.”

Ambiguous Loss Defined

Psychotherapist Pauline Boss coined the term ambiguous loss more than 40 years ago, while working with family members of loved ones who went missing in action during the Vietnam war. Fueled by the recognition and prevalence of Alzheimer’s and other forms of dementia, the term is now coming into popular acceptance and use.

Boss says ambiguous loss uniquely differs from other types of losses: “Ambiguous loss in that there is no verification of death or no certainty that the person will come back or return to the way they used to be.”

There are two types of ambiguous loss. One involves physical absence with psychological presence, as Boss found in the relatives of the Vietnam MIAs and is finding currently in her work with family members separated at the U.S./Mexico borders. Many people experience also this type of ambiguous loss in divorce or adoption, for example.

The second type, most relevant for caregivers, involves psychological absence with physical presence — as occurs when dealing with Alzheimer’s disease and other dementias; traumatic brain injury, addiction, depression, or other chronic mental or physical illnesses that take away a loved one’s mind or memory.

In her most recent book on the subject, Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief, Boss writes: “Dementia creates ambiguous loss. The duality of your loved one being absent and present at the same time is confusing, and finding meaning (or making sense of your situation) becomes immensely challenging.”

The challenges are intensified because most of the rest of the world, including close friends and family members, often don’t know how to lend support during the toughest of times. “With dementia, something is definitely lost; you feel it, but no one comes to you — as they do after a loved one dies — to validate or support your loss,” according to Boss. “People even say things like ‘You’re lucky; you still have your mate’ or “You still have your parent.’ But you know you don’t, really.”

Suggestions for Coping

Tips for stressed-out and time-pressed caregivers often echo the self-same advice that sounds simple but is often nearly impossible to practice: Be sure to take care of your own health and avoid becoming isolated from others.

Boss and others suggest a number of additional coping strategies specific to caregivers dealing with ambiguous loss.

Find meaning. Define what the situation means to you. Sometimes that simply means taking the step of identifying what you’re experiencing as ambiguous loss, which can help make the whirlwind of emotions easier to understand.

Focus on the upbeat. Separate the negative thoughts and experiences from the positive and focus on the positive things — perhaps the fact that your loved one retains a sense of humor, remembers old songs you used to sing together, or seems able to socialize easily with others.

Give up some control. Most people strive to control events in their lives, and ambiguous loss makes that impossible. While you cannot control the loss you are experiencing, you can control your reaction to it and can take forward-focused and stress-reducing actions such as meditating and exercising.

Reconstruct your identity. Caregivers must re-establish who they are independent of the people in their charges. Boss suggests practicing “both/and thinking” — which is less stressful than feeling yourself to be a failure or wandering in search of self.

Some examples:

“I take care of both him — and myself.”
“I am both a caregiver — and a person with my own needs.”
“I am both sad about my lost hopes and dreams — and happy about some new plans ahead.”

Normalize ambivalence. Recognize that it is both normal and human to feel sadness, frustration, guilt, and anger in your caregiving situation. Observe and deal with these emotions as they come. Feel and acknowledge the negative emotions, but be careful not to act them out — by being angry with your loved one or yourself, for example.

Revise attachment. It is possible to let go of the past while still treasuring it. You can miss what was lost while also being grateful for and honoring what you still have. As a tangible example, this may signal the need to simplify celebrations and rituals for holidays, birthdays, and other special occasions.

Discover new hope. It is essential to have hope to go forward in life. You might be able to define and reshape your ambiguous loss into something beneficial, such as becoming a sounding board for others in similar situations. Or it may help simply to plan and anticipate some but tangible treats for yourself: dinner out with a friend, taking in a new movie, participating in a dance class.