How to Care for Yourself After Your Partner or Parent No Longer Recognizes You

Mary, whose husband is in memory care, wants to know how to mourn someone who doesn't remember her. She and Dan have been married for 50 years. "He was my best friend," she says.

Mark describes how hurt he feels 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.'"

Feyza Marouf, M.D., geriatric psychiatrist and executive medical director at Author Health, treats Dan and Allison (all parties requested using only first names for this story). "The first time Mary asked to meet with me separately from her husband put the reality of ambiguous loss to me very poignantly," she explains. "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 is a unique form of grief that occurs when a person is physically present but psychologically absent," Marouf 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."

According to Marouf, the process varies significantly for each individual. It typically unfolds over months or sometimes 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."

In Dan's case, his sense of humor often broke through. He might smile when he entered a room, shake hands with someone, or sit still and listen. "At our initial evaluation, he answered my questions in short concrete sentences," Marouf says. "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."

Mary described her husband as a person with different energies, emotions, conversations and interests.

"Although I was asked to evaluate Dan's dementia, my real patient was his grieving spouse," Marouf says. "Her grief took different turns. 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. 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."

When Mary tried to leave the house, Dan followed her to their car. At home, Dan annoyed Mary by reloading the dishwasher with clean items that had just been removed, or putting folded laundry back into the washing machine. When she saw these behaviors, she would break down in tears.

Marouf encouraged Mary to consider a day program to give Dan structured time with staff familiar with managing dementia. Dan took to the day program as if he was going off to work.

The hours of respite Mary had between drop-offs and pickups allowed Mary the space she needed to recalibrate internally. Her depression lifted. "Most importantly," Marouf says, "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."

Allison's aloofness, indifference, mistrust and unpredictable emotional distress remained an enormous heartbreak for Mark. He found relief in connecting with his two adult children who were experiencing a similar sense of loss and estrangement. They spoke regularly on the phone, and both daughters traveled from out of state to spend time with Mark.

As Allison's illness progressed, she slept more comfortably if she was in a separate bedroom. Otherwise, she would wake up startled to see Mark next to her, confused by who he was and agitated that she absolutely had to leave. It was painful for Mark to recognize that Allison did better alone.

"Mark worked hard to find the right caregivers for Allison," Marouf says. "It gave him a sense of agency even while he felt estranged. 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."

Weekends without Deborah's help were hard, as Mark struggled to manage Allison at home.

"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. 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."

With encouragement, Mark reached out to a man he knew from work whose wife was also diagnosed with dementia. Connecting with a peer who had been through a similar journey helped Mark feel less isolated. For Mark, who was generally hesitant about support groups and any formal therapy, finding a way to ask questions, compare notes and talk aloud about his experience with someone he knew and trusted had major therapeutic value.

Marouf counsels spouses and adult children caring for someone experiencing ambiguous loss 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 emotional support and answer their questions honestly.