Kathy Stack's transition from a community organizer to a full-time caregiver brought about stark changes in her life.
"I initially wasn't as resentful as I got to be later, but it was really disappointing to lose those connections with the community," she says about caring for her partner, Tom, who had Alzheimer's disease. "I was fortunate that I could take an early retirement because all my time and energy went into advocating for him, navigating the health care system, hiring and firing doctors, that type of thing. It was just a huge adjustment."
Her experience likely sounds familiar for millions of Alzheimer's and dementia caregivers. Kathy, who herself has been diagnosed with early Alzheimer's, shared her caregiving experience with loss and Alzheimer's disease with Hospice Foundation of America, which recently released a new educational program for clinicians and book looking at the losses associated with dementia for caregivers and individuals with the illness.
Grief and loss often accompany the journeys of caregivers, sometimes for years in the case of Alzheimer's or related dementia. Family caregivers experience losses not only of the person they love, but losses of their own familiar roles and dreams for the future.
Profound personality changes can occur in the person with Alzheimer's and dementia, causing caregivers to feel like the person they are caring for is a stranger occupying a familiar body. Spouses who become caregivers may become cryptowidows, married in name but not in fact, and grieve the loss of intimacy, companionship, and sexuality.
For many family caregivers, the decision to place their loved one with dementia in a facility can complicate grieving. Reactions to the loss generated by institutionalization can include relief, guilt, and failure.
Dementia also affects caregiver grief in another way. As people with dementia deteriorate, their ability to monitor and regulate their behavior diminishes. Some exhibit unusual behaviors such as using foul language or indecent and inappropriate actions, behaviors that can humiliate, embarrass, and isolate caregivers, increasing ambivalence and discomfort that subsequently complicates grief.
When the person with dementia dies, the caregiver's grief changes focus. Some people experience a "liberating loss" of relief that responsibilities and suffering by both the patient and family have ended. Some may even grieve the loss of the caregiving role, and feel a lack of focus and meaninglessness in their activities.
Coping strategies to help caregivers deal with the grief and loss associated with caring for those with Alzheimer's and dementia may include:
• Begin by validating your grief. Your feelings of disappointment, anger, sadness, anxiety, loneliness, and other reactions -- are normal and natural responses to the losses you are experiencing.
• Learn as much as you reasonably can about the disease. Understanding how people will act during the course of the disease can help you know what to expect and prepare for it.
• Make a list of questions for the physician and don't be bashful about taking notes.
• Tap into your support system. Remember that people can play different roles. Some may want to run errands while others may be good company for a movie.
• Take care of yourself. You will need to take an occasional break from caregiving.
• Formal support can also be helpful. Contact groups like your local Alzheimer's Association which may have local support groups and online or phone support.
• Plan for the future. What will you do if or when caregiving becomes too difficult? Even if you have to place your partner or parent in assisted living or a nursing home, you will remain a caregiver in the role of an advocate.
• When death arrives, allow yourself time to grieve. Along with grief, you may also experience a sense of relief that the long ordeal is over. Go slowly and be patient -- it is not always easy to resume a life that has been on hold for so long. And try to be patient with others who have good intentions but inadvertently say the wrong thing or try to minimize your grief.
Being a caregiver for a loved one with Alzheimer's or dementia is a difficult job. Many people find it rewarding, but the grief and loss associated with the role should not be overlooked or underestimated. You need not go through it alone.