"Yes, I know she has what you call ‘dementia,'” 75-year-old Sam said, his white-whiskered face set sternly as if challenging me. “But I choose not to focus on that very much.” He added, “Barbara and I have been married for over 50 years and she's still the same wonderful woman to me."
His hard look seemed to soften a bit when he mentioned his spouse and the love of his life. I was moved by his sentiment: No matter how much Barbara's thinking skills had deteriorated over the last few years, the essence of who she was — and even how she was — were still basically the same to him.
Nonetheless, I worried about the two of them. Because Sam was intent on limiting the degree to which their lives were disrupted by her condition, he wouldn't accept support services, such as home health aides and adult day programs, that are often helpful for patients with dementia. Likewise, because he played down that he was a dementia caregiver, he wouldn't consider attending education or support groups or asking their adult children and grandchildren to pitch in.
It was as if Sam felt that being loyal to Barbara meant largely ignoring her disease and trying to live as fully as they always had. To his way of thinking, dwelling on dementia's dire consequences and admitting her limitations would be giving in to it — something no strong, caring husband like him would ever do.
I have met many older spousal caregivers over the years in hospitals, primary care offices and retirement communities who refused to buckle to the reality of a loved one's condition, be it dementia, Parkinson's or cancer. It was as if they thought they could keep illness from touching them by rejecting all reminders of it, including educational pamphlets, medical treatments and social supports. It was only when catastrophe struck — a bad fall, sudden confusion, or medical complication and hospitalization — that they'd grudgingly admit, “Yes, my loved one has a bad condition for which we need some help."
Get help caring for a loved one with dementia with AARP's Care Guide