Sunday, September 9, 2012

Dementia: A Typical Caregiver Tries to Forge Ahead

Susan* could easily succumb to despair if she becomes too enmeshed in Peter’s* frame of reference and his needs. Especially when he’s hospitalized, she feels a constant anguish that the illness has taken them both. Despite her awareness of maintaining a level of emotional distance, sometimes, she just loses it—she falls off the pedestal and crashes. Even though she goes for days, even weeks, being the “ideal caregiver,” once her feelings get away from her—she simply can’t control herself.

She weeps for all of her family—herself, Peter and their children.  Peter can never be a real husband or father anymore. His “patienthood” has taken over. She rages over her daughters’ expressed concerns that, perhaps, they too, could inherit the disease. She surrenders to self-pity and the morose sense that her life is over—she’s done with having her own interests, her own space, her own self. At such times, she feels ready to sink beneath the earth—give up and let both die—caregiver and care receiver.

Fortunately, these anxiety-ridden episodes have been fewer over the last year. As a result of taking care of herself, they are far less intense, and don’t frighten her as much.  Despite Peter’s progressively downward spiral, she realizes she has been through the worst of it. She’s developed skills that provide a sense of competence.

Now, instead of collapsing into hopelessness, she looks for alternative ways to reduce the stress—talking a walk through a nearby park always works wonders. About a year ago, she fixed up the spare bedroom so she could be in her own space from time to time. She’s now considering moving in and sleeping there after Peter’s last hospitalization.

She’s found she sleeps sounder and feels more comfortable having a room of her own. At this juncture, she is increasingly turning within to find the strength and courage to see her through Peter’s final years. She also plans to propose to her daughters the likelihood that once Peter becomes incontinent and unable to speak because of the last stage of the disease, she plans to place him in a nursing facility. 

She has determined that she will survive this caregiving experience.

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

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