The Tofani’s: Keeping a Marriage Strong in the Face of Dementia

Frank and Angela are another dreamy couple with a bit of reality thrown in – dementia.

Frank was 18, Angela was 22, and it was a “fairy tale” romance – love at first sight. She was wearing a red dress and standing with her sisters. And he decided to pursue her, even if she was older than him.

59 years later they are still very much in love. They still enjoy “going for rides,” around Utica, NY, and beyond. They prepare and consume healthy meals together. But Angela’s dementia sometimes causes problems.

The toughest times for the Tofani’s are the mornings.  Angela awakes with fear and confusion, and Frank calms her down, but he also “gets upset.” He admits to losing patience with Angela and having his own health issues to worry about.

I met Frank and Angela in Utica. Frank wanted to show me their “saving grace;” an adult day services program at the Resource Center for Independent Living, where he drops off Angela 5 days a week 8:30-3pm. Angela looks forward to this routine. She tells me she loves sitting at the table, chatting with “the girls” and welcoming new people.

Meanwhile, Frank gets some time to decompress, pay bills, do grocery shopping, and attend to his health issues (kidney dialysis is looming). When he stops in to check on her, he gets a glass of orange juice and everyone welcomes him. In observing the workers, he is inspired by their warmth and patience, and that reinforces that what he is doing is right.

The bonus: this caregiver respite is paid for my Medicaid. Frank says he is not exaggerating when he says this place is the best thing for their health and marriage. Case in point: One day in July Frank had a stroke while he was home paying bills. Angela was at the adult day center, so he didn’t have to worry about her. He got himself to the hospital and the staff took Angela to her sister’s at the end of the day.

As a caregiver myself, I can relate to the need for breaks. I know the importance of social connections. And one thing I look for in a care institution is personalized client-centered care. Finally, keeping a loving couple together is perhaps most important.

A similar situation emerged with my grandfather, whose girlfriend was diagnosed with Alzheimer’s. Gramps tried very hard to care for her, but he finally had enough of the forgetfulness, the lost items, and the confusion. He found Linda an Alzheimer’s care facility and now visits her there.

Frank’s history and options are different. After 59 years of happiness, Frank wants to live with Angela as long as possible. “Maybe someday she’ll have to go into a care facility, but for now we’re together, and this place is our saving grace.”

Let’s face it, care networks matter tremendously when it comes to protecting autonomy. But I hadn’t considered the role adult day care may play, especially for working class Americans who qualify for Medicaid.

Thanks Frank and Angela, for helping me to see that Adult Day Services can enable autonomy and “aging in place,” and that love can persevere, despite the obstacles.

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Meika Loe

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