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Married with kids: The dementia decision

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My father is plunging deeper into the abyss of dementia, and while it’s heartbreaking to watch this ugly drama unfold, I can’t help but notice how much I’ve been caught up in managing his life. My weeks are peppered with tasks like stocking up on adult diapers, paying caregivers, scrutinizing the accounts on credit cards and paying his taxes, accountants and household bills.

That’s the relatively easy part. When a caregiver calls in sick or is unavailable on the weekend, my siblings and I exchange frantic calls. Who can cover which shift? Our personal commitments with friends, spouses and our own children hang in limbo until we grumpily rearrange our schedules to ensure that our dear dad has company and the food he needs.

The truth is that none of us wants to be his caregiver. Spending time with him involves long periods listening to brain-maddening speeches, as he wrestles with what’s left of his memory. The factoids he utters are incongruent and nonsensical, but there’s no point in arguing. This is a merciless battle waged silently and the real test is how long we can bear to sit quietly and listen to his inane chatter. A half-day shift can seem endless.

We fiercely debate the pros and cons of leaving him alone, even for an hour, because we know that if there are any hours in which he’s left unattended, there’s the chance he’ll take a walk and lose his way. The drama unfolds with calls to the police to look out for him, and involves long, worrisome hours of driving neighbourhood streets until we locate him. To date, he has never spent a night on the street. One of our big fears is the imminence of such an occurrence.

As our lives are increasingly consumed by managing dad, it often occurs to me how much easier it would be if he were in an institution. There would be nurses around to keep him safe, around-the-clock staffing and locks to ensure he does not wander outside the building. We could get on with our own lives without having to look after him, manage his home and supervise his caregivers. With one monthly fee to the institution, we’d know that his basic needs were being met. We could pop in and say hi at our convenience, instead of juggling his care with our own busy lives. And we’d be in the company of professionals who understand dementia, are used to listening to the nonsensical, one-way conversations it heralds and are intimately familiar with its progression.

I’ve toured these facilities. They are depressing beyond belief. So the idea of incarcerating my dad inside one of them is sobering. Am I ready to curtail his freedom to this extent? What kind of daughter sticks her dad in an institution? How much faster would he deteriorate in such a setting? And could I live with myself when he implores me that he wants to go home? These are the questions that pester my conscience and I cower before them, unable to put my own life and family before my dad’s.


So I stuff the idea into a dark corner, reasoning that we’re not yet at this junction. We know it’s coming – but not today, not this week, not this month. So we let him enjoy the sunshine of his own backyard and the wet tongue of his spaniel, Sparky, as he lovingly licks his hand. We let him bask in the purring weight of his longtime feline friend on his lap and the doting attention of a caregiver who has become a loving friend.

The annual Jewish milestones come and go now without my dad noticing. There is no point in subjecting him to long synagogue services, no point in suggesting he fast on Yom Kippur or eat matzah on Passover. Those days are well behind us.

The question I wrestle with now is this: where is the reasonable balance between his needs and mine? How does a daughter demonstrate her love and devotion in these trying circumstances? And who am I to put my own selfish needs before those of the man who raised me? I wish I had answers. Instead, the questions keep circling.