Alzheimer's blog

Navigating the stages of Alzheimer's caregiving

By Angela Lunde June 14, 2011

Last week Terry wrote, "These (caregiver's) comments are all over the place — insightful, heartbreaking and complex." Terry was referring to the wide variety of comments that come across this blog as we share our personal stories and reflect on one another's caregiving experience.

So, I'm pondering that perhaps there are stages or phases of caregiving — in much the same way we describe stages of Alzheimer's. In this regard, each of us reacts differently based on what phase in the caregiving journey we are in.

My thoughts are in no way scientific. I did, however, look to see if anyone else had written on the subject and found some similar themes and supporting ideas by Gail Sheehy in her book, "Passages in Caregiving: Turning Chaos into Confidence."

I doubt that these stages are linear — leaving one and moving on to the next. Instead, I believe caregivers experience some stages and not others, may linger in one stage for a while, can be in more than one stage (or phase) at a time, and may move in and out of the same phase several times.

First, I see a subtle and continuous dance between the phases of acceptance and denial. This makes sense because there's comfort in denial; it provides an escape — a way of coping. I don't think it's shameful to have feelings of denial; it's simply human nature. The thing is, when it comes to a disease such as Alzheimer's, we don't have the luxury to remain in denial for long. Reality slaps us in the face at some point. And eventually you recognize that acceptance doesn't mean liking or approving the situation, only seeing it as it is.

For some, there's an "Am I a caregiver?" phase. Maybe it's at the time of diagnosis, or when you begin to take on certain tasks that were previously the job of the affected one. Perhaps it's when someone else labels you a caregiver.

At some point, many caregivers speak of entering a phase or period referred to as "The new normal." I see this as a time when normal refers to living with uncertainty and unpredictably.

For sure, there's the phase of "Redefining (or reframing) our relationship to the person with Alzheimer's," as we discussed recently. This can be a tumultuous time when you're figuring out how to be in a new relationship with the affected one.

How about the "Where have all our friends gone?" phase. Many caregivers (Floyd from a previous blog) experience the all-too-common separation and sense of isolation from friends.

"I feel trapped, I am losing it, I can't do this anymore" phase. Need I say more?

Fortunately, for some there seems to be a "Smooth sailing" phase. This is essentially a time when new skills and new ways of communicating have been acquired. It can be a period when things seem to be running smoothly ... until "The crisis" phase — a shift from the status quo.

Possibly a bit later in the journey there's the "It's really happening" phase. These are times of extraordinary grief and loss — a time when the consequences of accepting the reality of the situation are felt fully.

For most, there's "The long good-bye" phase. Caregivers understand the ambiguous loss of Alzheimer's. Some wonder how long this will go on, sometimes wishing (often in silence) that it would end.

For each of you, I hope there's an ongoing phase of transformation. My teacher, spiritual mentor and friend, Lyn Prashant, writes, "Grief is the most available untapped, emotional resource for personal transformation. We don't just get over our grief. Instead, we change our relationship to it. When we lose something or someone, and that identification must change, we have the opportunity to rebuild ourselves."

Caregivers, no matter what your stage in this journey, be kind to yourselves and always believe that you're doing the best you can at this moment.

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Jun. 14, 2011