Care recipients, like caregivers, are unique. Some are “do-it-yourselfers” who refuse any help, even though they desperately need it. Others are dependent on family or neighbors, sometimes beyond the latter’s ability or desire to help. In the middle, are those who hire help when they need it. Along this continuum, we find those who depend upon and trust strangers. What’s a family caregiver to do when a loved one turns away from family for help?
Years ago, I offered to take my aunt on a trip after my uncle—her husband—had passed away. Having expressed her desire to see the National World War II Memorial that had just opened, I promised my aunt, I’d take her to Washington DC. It would be an honor to walk beside one who served during WWII. Her remembrances as an Army nurse would certainly breathe life into history.
A member of the Daughters of the American Revolution (DAR), she was a wife, mother and entrepreneur for over a half-century. With my uncle - my father’s brother – she had gained much wisdom over those years. I often enjoyed learning these nuggets of life’s wisdom over breakfast. One nugget seems even more important, today: Take time to have fun.
The following year, during the April cherry-blossom season, I flew from Los Angeles to Chicago’s O’Hare airport, so we could fly together to DC. It had been a while since I’d been in our nation’s capital. As I got used to navigating the subways; spotting my hesitation, she immediately reached out to strangers rushing by. After I rechecked the maps, I turned to see her with a homeless man. I felt uncomfortable about her reaching out to people she did not know and yet, I recalled my father’s actions when we were in public places. On several occasions, after we moved him into our home following his diagnosis of dementia, he’d turn to people he did not know when he didn’t like my answer. He even argued with me at the post office as I tried to put a stop to the letters he was getting from an organization to preserve social security. His annual donations had increased to biweekly checks.
Before my aunt and I ventured to DC, my cousin had alerted me to her mom’s TIAs (mini-strokes) and their possible effect on her memory. After that initial incident, I felt pressured to navigate confidently, below ground and at street level.
Over a relaxing dinner and wine later that evening, I was curious. I asked my aunt and she matter-of-factly answered, “You didn’t know where you were going, so I asked for help.”
While I felt slighted, I understood what was happening after years of caring for my late father and working with family caregivers and professionals caring for people with dementia. When the tide of disease or illness touches the core of our very being, our survival instinct is to push back. My aunt accepted her fate and despite showing signs of dementia, managed to hold onto her independence.
Oftentimes, this means pushing away too-helpful family members who threaten one’s independence. Visualize the tug-of-war between a parent and assertive teenager. Likewise, when a well-meaning family member tries to prevent a person with dementia from doing things that preserve independence such as driving, the person will do it anyway. Complex family history affects one’s ability to push back the tide of illness and disease like dementia. A helpful child or spouse may be shunned while laissez faire overtures are welcomed. While our motives will guide our actions including feelings of guilt, the need to exact revenge or a sense of duty, our care recipient will feel comforted by strangers. Without any family history, these people offer a fresh approach and are then adopted as “trusted allies.”
These can be the most endearing and yet frustrating times spent caring for a loved one. The best approach is to cede a need for control. Intervening may create greater resistance and even reduce trust. Instead, monitor on a regular basis.
Make sure that the “trusted strangers” are acting in the best interests of your loved one – physically, mentally, emotionally, spiritually and financially. Finally, be honest with yourself. Are you feeling hurt? If your spouse is turning to strangers this is even harder… but know, in the case of dementia, that your spouse, parent, or other loved one is not acting, the disease is.
Any kind of caregiving is going to require coordinating with other people and entities, such as doctors, therapists, insurance, maybe other family members or non-medical caregivers. This is called coordinated care.
We have created a library of support for family caregivers who may find themselves overwhelmed or confused as the symptoms of Alzheimer's disease.
Caregiving and relationship expert, Barry J. Jacobs, has a new book that focuses on marriage for people a couple of decades into their matrimonial journey.