Alzheimer's blog

Human connectedness is a lifeline for Alzheimer's caregivers

By Angela Lunde May 30, 2012

Recently, I was once again engaged with persons having memory loss and their support partners. They were participating in Mayo Clinic's 54-hour HABIT (Healthy Actions to Benefit Independence and Thinking) program.

A striking feature of spending significant time with people in a life altering situation is how much there is to learn and to grow from the experience.

Olivia Ames Hoblitzelle, in her book 'Ten Thousand Joys, Ten Thousand Sorrows", wrote: "If one holds even remotely, the possibility that our lives unfold in some innate order, then we are here to learn, work through, and hopefully transform the difficulties that come our way."

The folks coming to HABIT attend with an eagerness to get the answers, learn the right way to do things, and fix the problems with which they come. They arrive with anticipation and hope. The program trains specific skills that take advantage of the fact that procedural memory is preserved in persons with mild memory loss.

And because transferring a new skill to a habit takes time, participants practice and repeat the use of a new tool. This tool becomes a sort of surrogate memory in their daily life. Support partners are involved as well, recognizing that they will need to reinforce the new skills once the program is over.

Yet as the days go by, participants often realize that it may be the more intangible aspects of the program that are most challenging, unsettling, and possibly transforming. In an intense 2-week program, there's no escaping the changes that have occurred in the person they love with cognitive impairment.

For the support partners (or caregivers), it may be the first time they are truly confronted by the reality of the situation. Until now, it may have been easy to put aside the subtle changes and hold tightly to a sense of normalcy, for this is how we cope.

The intangibles that I speak of are really about being on a journey of grief and loss — perhaps moving from denial to acceptance for the first time. I say first time because caregivers move in and out of denial throughout the caregiving journey. And with this shift comes disbelief and distress, followed by periods of anger and frustration; emotions that are likely concealing grief.

Each support partner or caregiver will have his or her own way of dealing with what is occurring, but for many, opening up to this grief can be daunting. I believe what is often at the core of caregiver grief is letting go of the person they once knew — the ambiguous loss of having the person physically there, but in the deeper sense feeling a profound vacancy.

Caregivers in HABIT, as certainly all caregivers over time, come to recognize there are no perfect solutions; clear answers rarely exist and there's no fix. This reality can be frightening. But when it's acknowledged, more lessons emerge. Some caregivers learn to see the good in ambiguity, or at least tolerate ambiguity.

They begin to find contentment in good-enough-for-now solutions and believe they're doing the best they can. Many caregivers learn to let go of what they cannot control with less guilt about not being able to make things better. They can find value and a renewed connection in a less than perfect relationship.

Over time, some caregivers discover how to live more fully in the moment more often, rather than in the past or future. Caregivers learn that there can be more comfort in facing fear and anxiety and sadness, rather than denying these emotions. For many, they learn that in challenging times human connectedness is their lifeline, and that meaning and hope are most easily found in the company of others.

May 30, 2012