If you think retirement is all fun and games, let me assure you it’s not. Especially if you have an older parent whose health is failing.
As the daughter of a 92-year-old mother with advanced dementia, I can tell you that the strains and stresses of dealing with my mother’s disease are significant.
Not that I begrudge her that — not at all. But it’s an emotionally trying time, and I feel like I’m losing her by teaspoonfuls.
I’m in good company, though, since I see lots of other 50 and 60-something-year-old daughters and sons (mostly daughters though) tending to their parents at the care home.
We try and hide our embarrassment when our parent comes out of their room half-dressed, or screams “You bitch!” at the care aids, or bites the nurse as she’s trying to give her medication. We know it’s not our parent doing this, but rather, the dementia that’s causing their odd behavior.
It’s very disturbing to see these things though, especially if you’re not an expert on dementia, which most of us aren’t.
On a personal note, there are those days when my mom sits in her wheelchair, slumped over, sleeping so deeply that I can’t rouse her. And I cry. Those times when I visit her and she’s unresponsive or looks more frail than usual, I ask myself if this is the last time I’ll see her.
I try and steel myself for the worst, but it still undoes me. It’s hard to be unemotional when the highs are so high and the lows are so low.
And yes, there are highs. Like when my mom eats her whole meal by herself. Or strings a coherent sentence together. Or she says “I love you, too.”
I got a book called When Someone You Know Has Dementia by June Andrews, and it’s full of really practical, sensible information and advice for caregivers and family members.
For instance, it explains that depth perception is often affected in people with dementia. And that dehydration can cause urinary tract infections.
The author covers a range of issues and how to handle them sensitively. She also addresses those hard decisions that families have to make, such as DNR (Do Not Resuscitate) orders, tube-feeding, and end-of-life pain management.
Information doesn’t make it any less painful watching my mom become a stranger who babbles and doesn’t understand even the simplest questions.
Thank goodness for her moments of clarity, like when I got back from a two-week vacation and her first words were: “Where were you?”
Like retirement, dementia is a journey. Expect the unexpected. And be grateful for each day you have.
Shelley Civkin is a retired communications officer with the Richmond Public Library
