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The Stages of Caregiving

It can help to recognize there is no tidy, single, all-encompassing definition for "caregiver."

 Rather, it's a job that includes multiple responsibilities which vary not only from family to family, and not only within one family, but within the particular relationship you share with your spouse, aging parent or other loved one.

The caregiver you are today may not be the caregiver you were six months ago because the care your family member needs – the care you need to provide – has changed.

 In the same way, the caregiver you are now may not be the caregiver you will be in six months. If your loved one's health improves, you may be less involved. If it worsens, you may be more involved.

Further complicating this, once you and your family member have experienced a particular facet of the relationship and then moved to another, it doesn’t mean you will not return to that first one for a time. Even so, generally, the caregiving role is a progressive one as your loved one's needs increase.

And, again, generally, the role of a caregiver follows a particular pattern which can be identified. In other words, within the spectrum of caregiving, it’s possible to place just about every caregiver, including you . . . today.

These are the stages researchers have identified although -- it’s important to note -- they don’t necessarily follow this sequence.

Pre-caregiving. The caregiver sees himself or herself as a helper, beginning to lend a hand with a limited number of tasks but doesn’t identify himself or herself as a “caregiver.”

Self-identifying. Those caregiving tasks have increased to the point the caregiver realizes and says "I am a caregiver" The caregiver now defines the role for himself or herself or continues to "just do it."

Studying and researching. Adopting the role of a student, the caregiver wants to know and understand a loved one's condition or illness, including its symptoms and prognosis, and begins to looks for resources for stress management and for informal support, such as family and friends.

Acting like a caregiver. The caregiver is actually doing the work, increasing the number of tasks and their frequency, learning new skills and improving on others, and as his or her family member's health deteriorates, begins to feel the stress.

Recognizing challenges. The caregivers sees the impact of the situation: the emotional strain for both the family member and the caregiver, the member's resistance to accepting help, and the caregiver's own exhaustion, anxiety, and anger.

Getting help. The caregiver acknowledges the need for help. The spirituality of the role of caregiving becomes more apparent and the caregiver incorporates prayer and the awareness of God into daily activities. The caregiver locates and accepts formal support from social services and expands informal help to include the extended family, more friends, and the parish community.

Managing the role of caregiver. With that added help, the caregiver begins to be more proactive in his or her approach to the role. The caregiver may decide on a "game plan," learn about and use new coping strategies, and begin to feel more in control and more confident.

Preparing for the end of caregiving. The caregiver understands that the role of caregiving will end with the death of his or her loved one. In many ways the caregiver begins to grieve the loss of both his or her "once-healthy beloved" and the person needing care that family member has become. This is the time the caregiver most clearly sees the true value of caregiving and the love and respect he or she has for the one who has needed care.

Moving on after death. The caregiver experiences shock, even if death was expected, and grieves the loss of his or her loved one. There may be a period of empty time in the day, a feeling of "now what do I do?". This is a good time to rest and reminisce. Acceptance and appreciation of the experience will gradually come.