Helen cradled a cup of coffee in her hands as she chatted with a friend at the kitchen table. In the other room, Helen's 87-year-old mother was watching a sitcom on television. Helen glanced toward her mother and lowered her voice before continuing the conversation.
"She watched that same episode yesterday, but she doesn't remember," Helen confided to her friend. "The dementia is just so bad now. To be honest, I feel like the Mom I knew and loved has died, and the person sitting in there is a stranger to me. It makes me feel so sad."
Helen may not have realized it, but she had just described a condition called ambiguous loss. It is sometimes characterized as a form of grief – one of several types of mourning a care partner can experience before and after they physically lose the loved one they have cared for. Try these strategies to recognize and cope with three types of grief you may encounter on your caregiving journey.
Many dementia care partners have experienced this phenomenon, in which it feels like a family member has fundamentally changed so much that the "person they were" has been lost. In describing this experience, some care partners may say things like, "I know he's still here, but he's no longer the man I married."
In a live chat on this topic, social worker Susy Favaro from the Banner Alzheimer's Institute explained how ambiguous loss can affect care partners. Ambiguous loss can cause a care partner to feel confused because they still feel love for the person they see before them, even though that person might seem like a stranger. This sort of disconnect between a caregiver's feelings and the reality of the situation can cause personal stress and even affect family relationships.
One strategy Favaro suggests for coping with ambiguous loss, based on the research of family therapist Pauline Boss who pioneered the concept, is to try to engage in "both/and" thinking instead of "either/or" thoughts. This type of paradoxical thinking allows you to acknowledge the truth of two seemingly incompatible ideas. For instance, Favaro said, you can acknowledge to yourself, "Both my mother needs to be cared for, and I need to take care of myself." Engaging in this type of both/and thinking can help a care partner become more comfortable living with the uncertainty that caregiving can bring.
When Carlos' wife received a terminal cancer diagnosis, he immediately felt sad, angry and fearful about losing her – feelings he later recognized as part of the normal grieving process. However, Carlos felt surprised that he experienced these emotions while his wife was still alive.
"I felt confused, because I still had her with me, to take care of and cherish, but on the other hand I sometimes found myself imagining what life would be like after she was gone," Carlos said. "It felt wrong, somehow."
Anticipatory grief is normal and actually very common. When the reality of impending death descends on a care partner, the grieving process may start immediately. In addition to the characteristic signs of "normal" grief, like sadness, anticipatory grief may also include visualizing the loved one's death and thinking about your future without them.
Anticipatory grief can make you feel uncomfortable, but it may help prepare you for the grieving to come after a loved one's death. It also offers you the opportunity to create very meaningful memories in the time you have left with a loved one.
Only eight months after receiving a diagnosis of ALS, Destiny's mother passed away. And while Destiny, who was just 23 at the time, cried over the loss, she felt better within a few short weeks. She was glad she had been able to care for her mother during those final months, and afterwards she threw herself into her work and moved forward with her life.
About two years later, as Destiny began to prepare for her wedding day, she found herself frequently weeping for no reason and lashing out at her groom-to-be. That's when a friend gently suggested maybe she was still grieving her mother.
"It made so much sense," Destiny says. "I had not fully processed my mother's loss until I found myself missing her so much when planning my wedding."
Grief is not a linear process, though typically grief is most intense immediately following the death of a loved one, and then the pain lessens as time goes on. In delayed grief, the various stages of mourning can remain at bay for months or even years, especially if a person avoids the uncomfortable feelings that grief brings. One way a care partner can cope with delayed grief is to see a therapist. Specialized grief counselors can help you navigate your grief to resolve it and allow you to truly move on with your life.
Not All Grief Occurs After the Fact
All human loss is accompanied by grief. But for care partners, the grieving process may start in advance of the physical loss – or be delayed long after the fact. By recognizing these three types of grief you may encounter, you can be better prepared to get through these difficult aspects of caregiving.
Republished with permission from www.CaregiverStress.com