Caregiver Corner: When the Holidays Show a Change

Candle with holiday lights

By Brian Fox, SourcePoint Caregiver Program Coordinator

On night three of Hanukkah, three separate households—totaling three separate generations—gather under one roof. As is custom, the duty falls on the eldest male to light the Shamash (the middle “helper” candle) so that the three youngest of all present may use it to light the remaining candles.

The stroke of the match is reflected by pewter-framed photographs of relatives who once gathered in this same house—to light this same menorah. As the match is extinguished, its faint aroma of oxidizing sulfur accents the air already saturated with the evening’s feast’s lingering cooking oil. Wide-eyed children—too young to grasp the symbolism of the holiday, but eager nonetheless to participate—are gripped tightly by their parents. The familiar sights, smells, and sensations transport the adult members of the family back to all the times Dad—now Grandpa—would lead everyone in the Hebrew blessing before lighting the first candle.

Hushed tones fill the room as wax from the Shamash pools in its holder and the family begins to wonder why Grandpa still hasn’t spoken the prayer. Awkward smiles and half-gestures are met with a man’s vacant stare: no longer able to detect the equal-parts encouragement and concern conveyed through the family’s nonverbal cues. Eyes dart in unison upon the man’s son, now a father himself, as he shakily mutters half-remembered words in a language he cannot speak—slowly gaining confidence with each syllable.

Rituals—especially those reserved for holidays—can instill a sense of comfort. We all know what to expect throughout and they are usually followed by food, gifts, conversation, and of course joy. It’s why abjurations during these times stick out so vividly in our memories. I think it could also be why so many caregivers looking back on things recall the holidays as one of the first signs they recognized a change was coming.

The Hanukkah example above depicts a typical family realizing that there may be a form of dementia diagnosis soon, but different conditions can manifest in different ways. So many families I’ve spoken with describe when they realized with certainty that Mom has a degenerative muscle disease like Parkinson’s or ALS because of how a longstanding family Thanksgiving recipe came out tasting or looking not quite right. Or noticing Dad, whose smile on Christmas Day brightened the room, begin to dull from depression or avoid crowds and spotlight due to generalized anxiety.

You may have noticed there are two unifying threads between these experiences:

  1. They revolve around the holidays.
  2. They mark a life transition involving two or more generations. Also known as a role reversal.

The new generation inheriting the mantle of matriarch/patriarch/head-of-household, etc. always comes with a twinge of bittersweet but when circumstance demands those titles be relinquished before either party is ready—so often unceremoniously—it can be devastating.

Oftentimes, families might disregard these instances or segue into the next phase of the gathering out of an attempt to spare a loved one any feelings of embarrassment or “preserve” the evening—and honestly, I’m not sure if there’s anything else to do in that moment. Conversations surrounding a family member’s health are delicate things that even skilled, emotionally intelligent communicators presenting their observations under optimal conditions can fumble. In times like these, we are left with the binary choice of either ignoring the situation or engaging someone in a way that—from their point of view—could come across as a confrontation or putting them even more “on the spot” at a time when they are likely already feeling that way. This is also assuming the individual hasn’t progressed to a point where they are unable to articulate, let alone process whatever’s wrong without getting escalated.

Of course, these aren’t universal experiences. Some families have been known to rally together and mobilize on the spot when they receive these glimpses of their loved one’s future. Some ailing family members themselves can recognize and dignify their own growing need for care before it causes their loved ones undue headache and heartache. Some sons or daughters thrust into a new role may measure themselves against the shadow cast by their parent and succumb to self-doubt. Alternatively, some family members may feel as though the person who now requires their care failed to adequately meet their own developmental needs, creating additional layers to the situation. All sets of circumstances are difficult. It’s just difficult. And that’s okay.

When a person of authority or stature is unable to carry on in their duty to the family, a void can be immediately felt. The holidays don’t just happen because it is the last week in December and we all suddenly activate. There are conversations that need to happen and stamps that need bought and gifts that need wrapped and travel time to account for and there’s only so much precious real estate in the form of kitchen countertops and figuring out how many casseroles can fit in the oven at once and at what temperatures and making sure there’s coloring books and puzzles so the kids have something to occupy themselves and banishing all those porcelain dolls and tchotchkes that take up so much space so the kids don’t get hurt or break anything and why did we ever buy all this stuff in the first place and… you get it.

I realize this message is a bit of a departure from my usual tone, but please don’t mistake this for pessimism. Families all go through changes. It’s actually what makes them beautiful. Every new generation puts their own spin on things just as every set of parents does the best they can with the tools and abilities they received from their parents before them. Nobody in this life asks to be born, nor can we control what expectations others—even our own family—have for us. But we can reclaim and redefine the titles life hands us; keep those rituals alive or alter them just enough to maintain the original spirit; or eschew tradition altogether if it no longer serves you and those you care about—a statement that applies to the holidays and life, in general.

Thank you for taking a moment to consider and empathize with just one of the many types of relationships that make up the entire spectrum of caregivers. Partners and spouses must grapple with a different set of challenges unique to them, which I hope to explore in future updates with you all as well.

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