With Mayo Clinic health education outreach coordinator Angela Lunde

Last week at the support group I co-facilitate, three women shared difficult news — they had each lost their loved one with dementia within the past few weeks.

They expressed a variety of emotions including relief, guilt (guilt for feeling relief, guilt for wondering if they did enough), and profound sadness. They spoke about the void they are grappling with now.

Just weeks ago, their days were filled with orchestrating care, medications, doctor's visits, baths, and sometimes challenging behaviors. They had been spending their days worrying, grieving, and feeling overwhelmed.

Now, life is dramatically different, not necessarily better or worse, just different. Important to all of us around the table that evening was the discussion of "lessons learned" from these seasoned caregivers.

During the group they each spoke eloquently about the precious time they spent caring for their loved one, and while they would not say that this time was blissful, it was indeed special and precious. The women spoke about how they had learned to live in the 'moment' and not force their loved one to remember or anticipate anything beyond the now. And if their loved one insisted that they were their mother instead of their wife, well then, for that moment they were the mother.

Elinor Fuchs, a professor at the Yale School of Drama wrote in her book "Making an Exit:" "Actors are taught — Stay in the moment. No point in going behind (my) Mother with a little cognitive vacuum cleaner to straighten up meanings, or running ahead with plans for the day. On the stage it is always now (for someone with Alzheimer's disease)."

The women spoke about the later stages of the disease. It was at this time they learned not to dwell on their loved ones failure to "know" them through names or roles (i.e. husband, wife, son, daughter). However, these caregivers were certain their loved one still "knew" them as a special person in their life who provided a sense of belonging, reassurance, and love.

For these three women, completing a caregiving journey has brought profound life lessons, and in some (maybe peculiar) way, their lives have been enriched. More than anything, I know the wisdom and life lessons they have gained will be passed on to the caregivers sitting next to them and across the table. In the group last week, one of these women held the hand of a woman attending for the first time as she cried about her declining mother. This is the life of a support group come full circle.

Add to del.icio.us Digg This Add to Technorati Stumble It!

COMMENTS PAGE

Latest entries