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Married with Kids: The strain of dementia on a relationship

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As dementia continues to pillage my dad’s mind, it occurs to me that oft-used phrases, like “I love you” and “I’m here for you,” really don’t mean very much until they’re challenged. These words of caring and professed affection slip so easily from the tongue and so gently into the ear of the recipient that they have become commonplace. No question, it feels great to hear folks tell you they love you and they have your back. But until those words need to be transformed into actionable deeds, how can you ever be certain you mean them?

What does it mean to love someone through thick and thin, through illness and health? And when a prolonged illness prevails, how, exactly, do you prove your love? These questions pester a conscience already heavy with the burden of my father’s illness. What are the limits for a loving daughter to prove her love and still live her own life? There’s no line in the sand to delineate where duty starts and ends, or when you can comfort your conscience that you did everything you could. There’s always room to do more, sacrifice more time, more effort, more everything, for someone you love.

My siblings and I have put caregivers in the front lines of dad’s needs and it’s the caregivers that do the dirty work of preparing his food, crumbling his daily doses of medication into yogurt and feeding it to him, ensuring his bowels work and that his clothes are clean. We who have professed our love all our lives pop in for half-hour visits when it’s convenient, watching anxiously as his movements become stiffer, his belt looser and his mind emptier of any organization.

Half an hour is not a long time in a day, but in my dad’s company it feels endless. The illness is a monster, a now unavoidable spectacle that demands to be looked at. To be with our father is to be forced to acknowledge, on a weekly and daily basis, the continuing decline of his condition. Last week it became apparent that cable television was no longer a necessary expense. This week we learned that he can no longer dial numbers on the telephone, meaning the landline is essentially defunct. Every week there’s a new loss, a fresh, shocking blow, a metaphoric ice bucket dumped on the head of a visiting child that tortures the mind long after the half-hour visit has passed.

We watch in shocked silence, deeply grateful that the caregivers are sparing our dad days, weeks and months in an institution. We know that in a “home” his needs would not be equally met and that none of us could justify halting our own lives and disrupting our families to serve as his caregivers. We “throw money” at this illness, praying it will preserve some vague quality of life for the time that remains, however long that will be.

Is this love? Or were our words empty when we murmured them? Those words of affection came so easily when our father was our personal taxi, our financial provider, our home-based doctor when we were sick kids holed up in bed. When he was a fit, able, full-functioning member of society it was easy to look at him with admiration and pride, to say, “this, here, is my father, and I love him!”

READ: MARRIED WITH KIDS: FINDING DIGNITY IN DEMENTIA

He’s a shuffling ghost of that person now, much harder to remember as the smart, funny, loving, radiologist he once was. That’s the man we want to recall, but the dementia-ridden senior that nags at our conscience is the one in the forefront of our lives. He needs our love and our time, but it’s much harder to give those things freely and generously right now.

After her stroke, my grandmother spent the last three years of her life in a home calling my father’s name. I comfort myself with the recollection that all those years ago, my dad did what he had to do to deal with an excruciatingly difficult situation.

Today we are faced with that excruciation and each of us deals with it as best we can. But if this is a test of our love, I often fear that we fail horribly to prove our affection. 

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