Dementia destroys our loved ones’ minds and bodies. We watch their decline, fear future losses, and worry about changes in relationships. As a geriatrician, my mind knew the natural history of dementia. the moment Mother’s doctors confirmed the diagnosis, my mind showed my heart my mother’s last days, beginning my grief that very moment. This was anticipatory grief. I watched dementia take mother from me in little pieces. This was living grief, which dementia brings on with a vengeance. Physical illness gives unmistakable evidence that the loved one is sick ( weight loss, weakness, etc.) but in early and moderate dementia, our seniors look like themselves. Caregivers CAN forget, and expect a reaction the senior can no longer give. Caregivers experience painful disappointment in the first seconds of an interaction, every…single…time.
Dementia also destroyed my relationship with Mother. I no longer had her comfort and counsel as I struggled as a working wife and mother. I managed her affairs, advocated for her through the health system, and at the end, bathed and fed her, but there is no role reversal in caregiving. In the seventh of ten caregiving years, Mother gave me a confused look and said, “Do I know you?” Even though I’d done everything for Mother for years, that day,I felt like a two year-old whose mommy had left her all alone.
The adult child’s grief is painful enough, but a spouse’s grief is much worse. Their relationships lose pieces that children cannot know: life history, special touches, and inside jokes. Dementia sufferers are not dead, but they can no longer function as spouses. This creates ” Another Kind of Widow’ ( a special chapter in my upcoming book The Doctor is IN: Answering Your Questions About How to Survive Caregiving, a follow-up for TO SURVIVE CAREGIVING: A Daughter’s Experience, A Doctor’s Advice, which I published in 2007.) Early diagnosis brings more effective care planning, but it also catches couples in sexually active phases of marriage. What does the healthy spouse do?
In Jan’s Story, “Love Lost to the Long Goodbye of Alzheimer’s,” CBS correspondent, Barry Peterson, describes losing his wife and journalism partner, Jan Chorlton, to dementia that attacked her in her 40’s. He shares his pain and how three lives blended through his decision to develop another relationship. Whatever the spouse decides, behavior must support that choice. For example, if a man choses not to develop another attachment, he shouldn’t offer rides to any of the church ladies after choir rehearsal.
Caregivers know they are sleep-deprived. They know their backs hurt, but most don’t recognize the effects of anticipatory or living grief. In my experience, nobody even talks about “pseudowidowhood” and its especially painful challenges. Caregivers, their adult children, and any one else who cares must recognize that, though grief is invisible, it just as stressful, if not more so, than all other aspects of caregiving. Encourage caregivers to reach for support through caregiver groups, clergy, and behavioral health counselors.
Stay tuned this week (and the rest of the month) for more support and information on Alzheimer’s and other dementias
Wisdom on Wednesday : Guest blog from Dr. Darby Morhardt about participating in AD research
Woodsonian Informational Thoughts on Thursday; How Do People Die of Dementia, and How Do I Recognize It?