The main reason that Willa isolated herself while caring for her disabled husband, Dan, who was paralyzed from a massive stroke, was that she was afraid all her emotions would spill out if anyone asked her how she was doing. It was easier for her to buck up and face her long, difficult days without “going there.” But as the months of caregiving became years, Willa began to find she could no longer control her feelings.
When a police officer pulled her over after she’d rolled through a stop sign, she began to cry and couldn’t stop. He became so frustrated that he just gave her a warning, but even then, she couldn’t stop wailing. A dam had broken. It took her a half hour to calm down enough to go home and appear composed for Dan.
On another occasion, when Dan spilled water all over himself, she watched herself blow it out of proportion, unable to stop berating him for being so clumsy. Later when she was calmer, she apologized to him again and again but felt she’d never forgive herself for yelling at him.
Like many caregivers, Willa felt overwhelmed by the intensity of her complex emotions. She also felt tremendously ashamed about being overwhelmed, as if she should be stronger. The hardest among her feelings to manage was a deep sadness that would come up suddenly. She was struggling with a variety of types of grief.
She was feeling “anticipatory grief,” the most common kind during caregiving, in which the caregiver is grieving the future loss of the loved one, knowing that he or she is eventually going to die from their condition. Often, caregivers want to hide these feelings from their care receiver, but the sadness can be so heavy that it begins to affect the caregiver’s physical and emotional functioning. It doesn’t end until their loved one passes away.
Willa was also experiencing what psychologist Pauline Boss has termed “ambiguous loss,” in which the person being grieved is still physically present but cognitively absent, such as when a care recipient has advanced dementia. As Boss has pointed out, these are especially stressful situations for caregivers because they feel caught between grieving the person who can no longer relate to them as they once did and still caring for that person who is very much present.
There’s also grief that is invisible, sometimes called “disenfranchised grief,” in which the caregiver experiences the loss of her hopes and dreams for the future with her care recipient, as well as mourning the changing balance of what used to be a relationship of equal partners to one of caregiver and care recipient. That changed balance often means decreased communication and physical intimacy between them. These losses are often not spoken about and are hidden from friends and family.
If a caregiver has to give up or reduce work and social occasions to be with their care recipient, then she can feel grief around the loss of her career, social circles, imagined future, and life goals. She can feel weighed down by the burden of all she has to do. Her sense of identity and independence may be imperiled.
When Willa came to see us for psychotherapy, we offered her a few important ways to manage her overwhelming grief. We hope these suggestions will be helpful to other caregivers, too:
- We provided psychoeducation about how common grief is among caregivers in order to help her understand that her feelings were normal. This helped her feel less ashamed about her reactions to caregiving
- We reinforced this message by asking her to share her grief feelings with us without censoring them or judging herself. We then listened closely and validated her emotions as she cried and talked about her losses, her loneliness, and her horror at Dan’s horrible circumstances. Since the day he had his stroke, she told us, she’d never stopped grieving for him and for herself.
- We recommended that she not try to protect her husband by hiding all her grief from him because his paralyzed state was a constant, glaring reminder to both of them of how trapped and sad each of them felt. We noted that efforts at protection by limiting communication only made them feel more distant from each other.
- We discussed the importance of finding a way to strengthen their connection with one another to develop a greater feeling of communion, provide mutual solace, and feel more like a team facing his disability together. We then gave her some ideas for how to have an initial conversation with him by starting small and just acknowledging to each other that these were hard times about which they both felt very sad.
- We recommended that Willa increase her social supports in other ways, including joining a caregiver support group in which other caregivers would be able to validate her feelings, too. After a few months of processing her grief feelings in therapy and gaining more control over them, we also suggested she try reconnecting with friends she’d isolated herself from in order to share with them a bit about what she was going through.
Therapy didn’t take away Willa’s grief feelings. To the contrary, it helped her become more aware of them and their impact on her overall behavior. But understanding and accepting those feelings through therapy made what were overwhelming emotions more bearable, brought her closer to her husband and friends, and helped her be less hard on herself.
Caregiving Essential Reads
To find a therapist, visit the Psychology Today Therapy Directory.
