Episode 1: Interview with a Caregiver
What is your name, and would you like to stay anonymous?
HR. Yes, but my initials are fine as well.
Who is the person you are caring for? Why are you caring for them?
My mother, who is now in her 80s. She suffers from Parkinson’s disease, along with diabetes. There isn’t much of a why when it comes to the reason I am caring for her, because she is my mother after all.
What does a typical day look like for you and the person you care for?
My mother lives with my father, who's in his 90s but still doing okay on his own. We have a paid caregiver who comes by a few times a week to help with hygiene, meals, and cleaning. I visit often to check on her, help her eat and use the restroom, and go with her to doctor's appointments. If any emergencies happen, such as falling off her bed, I act as her guardian.
How did you end up in a caregiving role — was it something you chose or something that found you?
It found me, but there was thought behind it. Both my siblings live far from where our parents have always lived, with one living outside the country, and have jobs with structured schedules that take up their entire day. The three of us talked about it, and we agreed it made the most sense to keep our parents in their original apartment for as long as we could. It’s the only home they've really known, and uprooting them didn't feel right, especially with my mother’s dementia. Since I'm the one who lives closest to them, that meant I became the one who shows up.
What's something about the person you care for that most people wouldn't know?
Although memory is something that makes up a large part of a person’s personality, my mother’s humor (or lack of humor) is still obvious. She still finds my father’s jokes to be boring and complains about them to me.
Is there a small routine or habit the two of you share that helps the day go more smoothly?
I constantly tell her what I’m about to do before taking any sort of action, whether it’s putting food in her mouth or washing her hands. Although she forgets sometimes, I think the frequent reinforcement helps her understand and accept what is happening in the moment to or around her.
Has there been a moment when you had to let go of an old routine and find a new one as the illness progressed?
Meals, definitely. She used to love big dinners with the whole family, especially when they went out to eat. Now that she has trouble chewing and requires a wheelchair to move, we've had to shrink that down, leaving those trips for very special days only. We now settle for food at her home with smaller groups of people, which keeps things much more manageable.
Are there any rituals around meals, mornings, or bedtime that have taken on special meaning?
Feeding her takes true patience because of the chewing issues, so I’ve slowed way down, offering small bites, waiting, and checking in. It sounds insignificant, but that time is when I get to observe her closely and see how she and her condition are doing.
Is there a phrase, song, or gesture that seems to calm or reach the person you're caring for, even on hard days?
I think holding her hand makes her calmer, even when she doesn’t recognize me.
Have you invented anything yourself — a trick or workaround — that isn't in any guidebook?
It's hardly a "trick," but I’ve found that when talking to her, it is easiest to speak slower and louder than I normally would, along with pointing to actual objects or pictures that match whatever I'm trying to say.
What's a moment recently that felt surprisingly joyful or funny?
Despite having difficulty talking, my parents still find ways to bicker. A few weeks ago, she put in so much effort into forming full sentences, just to tattle on my father for drinking too much orange juice when he was told to stop. It feels like she’s still the one keeping him in line after all these decades, and it cracks me up every time it happens.
What's something you wish someone had told you when you started this journey?
It is okay to ask for help. Whether it is your family or paid help, it is important to establish a support system to make caregiving manageable and to not burn out completely.
Is there a ritual that's just for you — something you do to take care of yourself in the middle of caregiving?
My car is my safe space. I often sit there in silence and mentally reset before continuing with the rest of the day, whether it’s returning to my job or continuing to care for my parents.
How has your relationship with this person changed since caregiving began?
Some days she doesn't know who I am at all and ends up getting irritated, sometimes yelling at me like I’m a stranger. I'm not proud of it, but there have been times I’ve snapped back or talked to her in an annoyed tone, even though I know it's not her fault. The lack of communication can really get to you, and I would be lying if I said that we feel more distant sometimes. Yet we are still mother and daughter, and nothing can change that.
Is there something you do together that helps you both feel like "yourselves" rather than patient and caregiver?
We talk about our family and look at pictures of them, particularly her grandchildren, whom she remembers the most. She especially loves talking about
If another caregiver just starting out could learn one thing from your experience, what would it be?
Don't measure how much your parent still loves you by whether they remember your name that day. Some days she doesn't know I'm her daughter, but she still reaches for my hand the same way she always has.
Is there anything about your experience you haven't been asked about but wish someone would?
Nobody really asks about my father in all of this. He’s in his 90s and still fairly healthy, but he has been watching his wife of over 60 years slip away in pieces, sometimes not even being recognized by her. Caregiving isn't just about her and me, but also about him too, and I don't think enough people think to ask how he's doing.
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