Dealing with the loss of a loved one is one of the most painful experiences life can bring. But what if that loss takes place while our loved one is still here? 

We’ve written many articles here on the Blog about the devastating effects of Alzheimer’s disease and other forms of dementia. Many of these articles have dealt with the prevention of dementia, or the precautions we need to take as we age to ensure proper care. But we have to admit, we had never heard the term “ambiguous loss” until we came across this recent article from NextAvenue in which freelance writer Michele Hollow defines the concept. 

As we’ll see in Hollow’s penetrating article, ambiguous loss refers to the pain of mourning a loved one who is still here – “physically present but psychologically absent,” as Hollow explains. It’s a unique kind of grief that millions of loved ones will experience. Recognizing the pain of ambiguous loss and coping with it are the thrust of Hollow’s report. 

Mourning a Loved One Who Has Forgotten Us  

Hollow begins with the stories of caregivers who are desperate to know how to mourn a loved one who is still here, but doesn’t remember their lives together.  

Her first example is Mary, whose husband of 50 years, Dan, is in memory care. “He was my best friend,” she says, though now he doesn’t remember her at all.  

We also meet Mark, who feels deeply hurt when his wife, Allison, fails to recognize him: “We’re sitting on the couch and making conversation, almost like it used to be. Then she’ll say, ‘This has been nice. You’re a very kind man. I’ve really enjoyed our talk, but now I must go home to my husband. My husband is waiting for me.'” 

Grieving the Loss of a Beloved Companion – and a Shared Future 

Dan and Allison (all parties requested the use of only first names for this story), are both being treated by Feyza Marouf, M.D., a geriatric psychiatrist and executive medical director at Author Health.  

“The first time Mary asked to meet with me separately from her husband put the reality of ambiguous loss to me very poignantly,” Marouf says. “Prior to Dan’s Alzheimer’s dementia diagnosis, they had been looking forward to retirement as a joint adventure, with a long list of activities they planned to pursue. Mary was grieving the loss of that future, in addition to the specific loss of her companion.” 

Ambiguous Loss: Losing Someone While They’re Still Here 

Marouf goes on to explain more about ambiguous loss. “Ambiguous loss is a unique form of grief that occurs when a person is physically present but psychologically absent,” she says. “It’s often experienced by families caring for loved ones with dementia. Unlike the finality of death, ambiguous loss is particularly challenging because it’s an ongoing process of losing someone gradually while they’re still here.” 

She adds that the process varies significantly for each person who experiences it, unfolding over months and even years. “What makes it incredibly complex is that people living with dementia may have periods of clarity interspersed with times of confusion,” she says. “Some days they may recognize their loved ones completely, while other days they might not. This fluctuation can make the experience particularly emotionally challenging for caregivers.” 

Watching as a Loved One Becomes a Stranger 

For example, Dan’s sense of humor would sometimes break through, smiling when he entered a room, shaking hands with someone, or sitting and listening intently when someone was speaking. Mary described him as a person with “different energies, emotions, conversations, and interests,” and Marouf saw a glimmer of this, too. 

“At our initial evaluation, he answered my questions in short concrete sentences,” Marouf recalls. “Over the next year or so, there was less and less detail. His responses eventually trailed off to a word or two. He was no longer the quick-witted, constantly busy contractor his wife fell in love with, but a person Mary considered a stranger.” 

Shock, Grief, Guilt: Caregivers Deal with Painful Emotions 

While Marouf was asked to evaluate Dan’s dementia, she recognizes that her real patient was Mary.  

“Her grief took different turns,” Marouf says. “She was shocked to see the change in him, frustrated and angry at the impact on their future, resentful of being trapped at home, and tearful to feel so alone and exhausted. She felt enormous guilt about wanting to do things outside the home by herself.” 

Marouf continues, “As Dan’s dementia progressed (over several years), her husband grew quieter and tended to follow her from room to room. The only time he would get upset was when Mary attempted to leave the house without him.” 

Dan’s behaviors grew increasingly frustrating for Mary. When she tried to leave the house, he would follow her to the car. When she tried to do chores, he would re-do chores she had already done, like putting clean dishes back into the dishwasher or folded laundry back into the washing machine. Overwhelmed, Mary would frequently break down in tears.  

Respite Care Paved the Way for a New Kind of Relationship 

To help give Mary some support, Marouf encouraged Mary to enroll Dan in a day program. This would allow him structured time with staff familiar with managing dementia and give Mary a much-needed break. Dan took to it easily, treating it like he was going off to work.  

Better still, the respite Mary was given by the program gave her space to recalibrate and alleviate her overwhelm and depression.  

“Most importantly,” Marouf adds, “Mary found she was able to be present in a different way in the hours they shared at home. She was not constantly comparing Dan to his former self or irritated by the changes between them. She could acknowledge the impact of his illness while maintaining a connection to his presence, expressing her affection and care more openly as a new relationship developed.” 

For Another Family, Relief Comes Through Shared Grief 

Mark and Allison’s case was a bit different, as Hollow tells us.  

“Allison’s aloofness, indifference, mistrust and unpredictable emotional distress remained an enormous heartbreak for Mark,” Hollow writes. Mark found some relief in deepening the connection with his two adult children, who were also experiencing that similar loss and estrangement from their mother. They connected on the phone often, and both daughter would travel to spend time with him.  

The loneliness deepened as Allison’s illness progressed. She increasingly slept more comfortably in a separate bedroom. Otherwise, she would wake up startled to see Mark next to her, thinking he was a stranger. “It was painful for Mark to recognize that Allison did better alone,” Hollow writes.  

An Essential Step: Finding the Right Care Manager  

Marouf explains that Mark put in extra effort to find the right caregivers for Allison. “It gave him a sense of agency even while he felt estranged,” Marouf says. “He spoke with several care managers, and eventually found Deborah who connected with Allison. With Deborah, Allison was able to take short walks for ice cream, work on puzzles, bake cookies, watch television shows without any restlessness, or look through old photo albums.” 

Since Deborah didn’t work every day, weekends could be especially difficult on Mark as he struggled to manage Allison on his own.  

“Sometimes I’ve had to pick up the phone and act like I was calling her husband so he can reassure her that everything is OK, that she can stay where she is,” Mark recalls. “I’ll go into the other room and while she’s talking to me she knows my voice, she knows I’m Mark, but when I walk back into the room she has no idea who I am.” 

Mark was encouraged to reach out to a man he knew from work whose wife was also diagnosed with dementia. This connection with a peer who had experienced similar difficulties helped Mark to feel less alone. This was also a good substitute for support groups and formal therapy—something Mark was hesitant about—giving him space to ask questions, compare notes, and talk through his experiences with someone he trusted.  

Try These Strategies to Cope with Ambiguous Grief 

Marouf, who counsels spouses and adult children through the pain of ambiguous loss, offers the following strategies. We’ve included them from Hollow’s article verbatim.  

Marouf encourages caregivers to:  

*Acknowledge and express their feelings. 

*Find a support group. 

*Maintain meaningful rituals: Even if a loved one doesn’t remember shared histories, people can create new moments of connection by sitting outdoors together, sharing an ice cream, looking at photos together, listening to music, or taking walks together. 

*Remember that a loved one’s inability to recognize their family is part of the disease. 

*Reduce stress through exercise, meditation, gardening, socializing or other activities that bring joy. 

*Seek mental health support. 

*Focus on the present rather than on memories. 

*Maintain one’s own identity and relationships outside of caregiving. 

*Take breaks when needed and know that good self-care makes for a better caregiver. 

*Encourage grandchildren to continue interacting with their grandparents while providing 

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(originally posted at www.nextavenue.org)