caregiving
What To Expect When A Loved One Is Dying
Transitioning to caregiver for your parent is not easy. Here are some things I learned along the way.
5 min read
I thought I was an expert when it came to caregiving. After all, having a kid with a chronic illness, I had successfully navigated health insurance, doctors’ appointments, and medications for more than 20 years. Then, just when my daughter became more independent, my mother began needing my help.
But as experienced as I was at managing my child’s needs, I quickly realized I was unprepared for the emotional and logistical challenges of caring for a parent. When it falls on you to make the right decisions to keep your loved one safe, that responsibility can feel pretty heavy—especially when dealing with an adult who’s used to calling the shots. Here are five things I’ve learned that you might find helpful.
A few years after my dad died, my mom sold her home and moved to a continuing care retirement community in Florida. She’d always been strong and resourceful, with an active social life, and was determined to never be a burden to her children. She informed us about her pending move after she’d made her decision and consulted with an attorney and financial advisor. I was thankful my father had provided for her future and that she was making this move of her own volition. It was easy to take her independence for granted.
My siblings and I saw her regularly, and she seemed to be managing fine. I periodically offered to set up online bill pay, but she clung to her manual routine. It was only after she casually mentioned spending half a day balancing her checkbook, that I realized the hardship it had become.
Your parent won’t always admit they are struggling, so look for signs it might be time to intervene. Is mail accumulating or clutter piling up? Are they late paying bills or donating to every charity (or politician) that asks? Are there unexplained scratches or dents on their car?
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Before she moved, my mom asked me to sign on as a joint owner of her bank accounts in case she was ever unable to manage her money. When she asked me to handle calls with her financial advisor and accountant, they advised her to designate me durable power of attorney so I could act on her behalf. Both steps proved extremely useful.
My mom’s cognitive function gradually declined. One day, looking over her bank accounts online, I noticed she’d filled out several checks incorrectly. She finally agreed to let me take over her finances. I flew to Florida and spent the weekend sorting papers, collecting bills, and calling her service providers to switch the primary contact. When she transitioned to assisted living, I completed a change-of-address form to have her mail sent to me.
To that end, I would say to plan ahead: Ask for passwords, account information, and the names of your parent’s doctors. What’s more, consider having your parent sign a HIPAA form allowing medical information to be shared with you.
If you’re lucky to have siblings or other family members to help share responsibility, take advantage. Back when my mom was living on her own, my younger sister was her go-to for tech support. Her biggest qualification? Patience. After three attempts to teach my mom how her cable remote worked, I thought my head would explode. I happily handed it off.
I’m organized (OK, a control freak), and better suited to coordinating care behind the scenes. In addition to handling my mom’s finances, I co-manage her health care with my older sister, who lives in Florida. A people person, her strength is communicating with our mom’s medical providers and the staff at Memory Care, where she now resides.
Caring for an aging parent is an emotional mixed bag you can’t fully prepare yourself for in advance. Old feelings can return. My mom was loving but tough when I was growing up, capable at times of inflicting humiliating criticism. In Memory Care, before the right balance of medications stabilized her moods, she lashed out at her caretakers and kids. And lemme tell you—it was triggering. Hearing her snap, “Why don’t you just shut up!” instantly transported me back to when I was 6 years old.
This is where self-care was vital. For me, that meant taking a walk, meditating, watching TV (hello, Schitt’s Creek), or simply acknowledging my hurt feelings before reminding myself I’m no longer a helpless child and that I love my mom (and she loves me).
New emotions arise, too—especially when dealing with a parent’s dementia. It’s a particularly cruel loss that feels like a slow death. I still have my mom, but miss her terribly.
Nothing about memory loss or caregiving is funny, except the parts that are. When my mom was just beginning to decline, she called me nightly before dinner. She never said hello, but greeted me with, “I have a problem.” She was obsessed with the safe in her closet, convinced it was broken because she couldn’t remember the combination.
“Mom, just leave it open,” I’d tell her after painstakingly walking her through opening it. It contained no valuables; my sister had already removed them for, well, safekeeping.
I was frustrated each time she called until I picked up Roz Chast’s graphic memoir about her aging parents. I texted screenshots to my older sister and we howled, recognizing our mom’s nightly meltdowns in Chast’s descriptions of her dad’s (a symptom called sundowning). Heartbreaking and hilarious, the book gave me much-needed comic relief and the comfort of knowing I wasn’t alone.
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