What is caregiving like in the early stages of Alzheimer's?

In the earliest stages of Alzheimer’s, when both you and your loved one are still just trying to figure out what is happening, we cannot even speak of you as “the caregiver.” Assuming the role of caregiver requires a delicate negotiation to establish that someone is in need of care, and that isn’t at all clear early on. You have to be so gentle.

Many an individual in the early stages of the disease has blurted out, sometimes with some degree of anger, “I don’t need a caregiver.” And for the most part they are right. At this stage the affected individual can still pretty much do everything they need or want to do: drive a car, make a telephone call, socialize, cook a meal, and dress and groom themselves.

In fact, you are only a “caregiver in waiting,” waiting to step in if you are needed, and not otherwise. You haven’t been “commissioned” yet. As it becomes clearer to both of you where help is needed, you can offer that help and then again step back, when it is clear that nothing further is required.

This kind of back-and-forth is likely to go on for weeks and months, as the diagnosis is pursued, established and possible treatment is initiated.

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