How Caregiving Taught Me to Endure

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 Patrick. I’m a millennial man from California. I was a caregiver for my partner’s dad.

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

I moved to California from Oregon two years prior so my partner could be closer to her family. Her dad was in his 80s, had a history of mental and physical health issues, and his care needs were increasing. She faced considerable pressure from her mom and sister to come back and help with his care, and I was at a dead-end job working with adults with developmental disabilities, so we decided to move. I found an office job in our new location and was working there when he had a heart attack and went on hospice. About two months prior, by coincidence, I had become a hospice volunteer because I hated my job and was seeking more meaningful interactions with people.

He was discharged from the hospital and his wife was struggling to provide the level of care he needed, so the pressure on my partner to become his full-time caregiver became intense. She enrolled in the county home health services program to get paid for taking care of him, and I’d help out after work and on weekends. After a few months, it became apparent that my partner and her family simply could not handle the amount of care he needed. It’s hard enough to care for a person who has their mental faculties intact, but when they have serious mental illness, are combative, and require total assistance with activities of daily living, it is an extremely high-stress situation. My partner was at her wits’ end.

I quit my job (making sure my last day was on the first on the month so I’d have health insurance for that month) and enrolled in the same county home health services program to become his full-time caregiver alongside his wife, making $11 an hour. We live 3/4 of a mile from their house, so I’d walk there three times a day (morning, afternoon, and night) every day, 7 days a week, to care for him with the help of his wife and the hospice team. I did that for 9 months before he died and took two personal days off during that time. I remained a hospice volunteer during that time, and the dual role gave me insight into what families on hospice go through. I never really knew him in the typical way people know each other, but he was chill and I wanted him to be able to do his thing.

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

My partner’s dad, due to his mental illness, was pretty withdrawn from the world that most people inhabit. He could converse a bit, but was laconic and generally uninterested in others. He spent the latter years of his life repeatedly walking around his block searching for cigarette butts because his wife wouldn’t allow him to smoke and he didn’t have it together enough to go buy a pack. He’d hide them in the bark of a palm tree on his property and smoke them when nobody was around to chastise him. He lived in his own world and was very peaceful when he wasn’t forced to do things he didn’t want to do (like maintain his hygiene, go places other than his home, go to the doctor, etc).

What was a memorable learning?

Bathing and changing someone in bed is hard and needs to be taught to new caregivers, which hospice often neglects to do. You just kind of observe the health aides and ask questions and try to emulate it. How do you change a sheet while someone is still in bed? It’s not as easy as you might think. It takes practice.

What surprised you about caregiving?

My capacity to endure hardship surprised me. This was a uniquely challenging caregiving situation for a variety of reasons. His wife doesn’t speak English (Cantonese) so we had to communicate in her second language (Mandarin), which I only took two years of in college, so our conversations couldn’t go into much depth. I could translate basic stuff for her and the hospice staff, but nuanced communication was not possible. It led to some challenging moments, especially when I disagreed with her methods of caring for her husband.

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

I was lucky because I was not a live-in caregiver. I could go to my own home when I wasn’t working, which was huge. I could go home at night and be done with it. I also exercised regularly, jogging at least 2, and up to 7, miles nearly every other day. I felt compelled to keep a daily journal. Being a hospice volunteer helped take me out of the little world that had developed. I kept a regular schedule.

I read a lot of philosophy: Heidegger, Nietzsche, Camus, Schopenhauer, Metzinger, and Diogenes. Pessimistic philosophy was particularly helpful in dealing with mental struggles. Even dark stuff like Thomas Ligotti’s The Conspiracy Against the Human Race and Emil Cioran’s The Trouble With Being Born. Stoicism is helpful.

What resource would you recommend to caregivers?

I searched websites for practical instruction when I needed to know how to do something, like change a diaper. I would recommend using the hospice team for guidance as much as possible. Ask questions, ask questions, ask questions. Ask the health aides how to do things. Ask the nurses how to do things. Ask if you can do things while they watch and give you guidance. Most are busy and just want to get the job done (they’re amazing, don’t get me wrong), but they’re not teachers, so ask them to be teachers. When I saw an aide change a sheet, underpad, and diaper for the first time, I was like, “holy crap, you made that look easy.” Also, don’t try to do too much. Know your limits. There’s only so much a person can handle, and there are resources out there, so avail yourself of them.

What advice would you give to caregivers?

Buckle up. You can endure more than you know. Plus, this will lead to a job as a Hospice Volunteer Coordinator, so don’t worry about what you will do after this (also another luxury I ended up having that most do not).