Nothing Is Easy, but I Get To See Mom Everyday

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Cait. I’m a millennial woman from Pennsylvania. I am currently a caregiver for my mom.

What did your life look like when you became a caregiver?

I was addicted to heroin and have been clean for 7 years. I didn’t really have any direction in life; no college and working minimum wage jobs.

My mom had a heart attack, triple bypass surgery, and stroke in April 2018. She came home November 2019, so I’ve been a caregiver for about 6 months.

I have a 12-year-old boy and a 20-year-old stepdaughter. My little family has been a godsend.

Who did you care for and what prompted their need for care?

My mom is a great person, and I’d do anything for her. She wiped my butt, so it’s only fair that I have to wipe hers.

She was really independent before she had a heart attack and was hospitalized. We had a great relationship, and that hasn’t changed. I know she appreciates everything we’re doing and I’m so happy I got her home before the COVID-19 pandemic. It’s just a different dynamic now.

I’m also happy I had a decent amount of time clean from drugs before this happened. I’m her only child and we can’t rely on extended family.

What was a memorable learning?

I learned how to get her briefs off without getting poop everywhere (know that sometimes it will get on you) and accepted that I’ll be dealing with gross bodily functions daily.

What surprised you about caregiving?

Probably how draining it can be and how easily I got frustrated at first.

Nights were the hardest for me and I can be grumpy. No, I can be mean. Words just come out of my mouth without thinking about them and I instantly regret it. Especially with her incontinence issues.

Here’s a crazy plot twist: my fiancé’s mom passed away the day after we brought my mom home. His mom had moved here from South Carolina after her daughter kicked her out on the street (long story) and she had nowhere to go. She came here at the end of August and was sick from COPD (chronic obstructive pulmonary disease).

My fiancé had to put his mom in hospice on November 9th. My mom came home on the 10th. His mom passed away on the 11th.

How do you try to balance being a caregiver while caring for yourself?

I’m lucky that I’m not doing this alone. I have help so I have time to watch TV, play games, crochet, and write. I also love to cook and I’m pretty good at it.

I’m quite a homebody so I don’t mind not having a social life. We joke that at least now I have an excuse to say, “No, I can’t go to the bar with you because I have to take care of my mom”.

My stepdaughter and fiancé do night and morning shifts, respectively. All of us get decent sleep. My stepdaughter will go back to school soon so we’ll adjust our routine accordingly.

What resource would you recommend to caregivers?

The Office of Aging, or Area Agency on Aging, is the best place to contact for resources. Different states have different names for it.

They set me up with Maximus, who will provide financial assistance and help convert the house to be more handicap accessible with a wheelchair ramp and a shower added to the downstairs bathroom. I’ll feel much better once we get both installed. It’s a bit of a project to get her into the kitchen to wash her hair, and I’m giving her sponge baths right now. I can’t wait for her to have a shower she can use.

What advice would you give to caregivers?

Do not be afraid to ask for help. I would have been less frustrated if I just let my family help. When I say family, I mean my immediate family. Not my uncles or aunt on my mom’s side. I can’t count on them and don’t rely on them at all.

Is there anything else you’d like to share?

Get a wireless doorbell. My dad got one for us and it’s been a great call button. My mom wears the button on a lanyard and we pass the receiver around to whoever is looking after her. We call it “The Dinger”. My mom is pretty much nonverbal because of a botched tracheostomy surgery; there’s scar tissue pressing against her vocal cord. She could win a whispering competition though, lol.

I enjoy having her home and I’m so happy I can see her every day. I’m grateful she wasn’t in a nursing home during this pandemic, but it isn’t easy.

My mom plans to start a food blog about the variety of foods I cook for her.