Occupation: Sociology Researcher
Location: Sacramento, CA
Preferred language: English
Who do you care for? Mother (76 years old)
How long have you been caring for them? 4+ years
How did you become a caregiver for your mother?
She had a lupus inflammation in the 1980’s. She was in remission for 30 years, but at the end of 2015 we started to notice symptoms. In 2016, she ended up having a seizure, when her medications stopped working. She was then put on immunosuppressants that caused her to get shingles. The doctors were 6 days late in treating the shingles, and by then the virus had traveled to her brain, triggering encephalitis, which caused the stroke-like incident. She went into a partial coma from which doctors didn’t think she’d recover, but thankfully she woke up. Due to the coma, she has early onset dementia and can barely see now, only some colors and light.
What are your daily experiences and caregiving activities?
My mom needs almost complete care. We change, bathe, shift her, feed her, and transport her. She can move her arms and legs but can’t bear weight. My dad, sister and I all take care of her.
On a typical day, we change her, get her ready, bathe her, and put her on the sofa with her lift. She is fed by tube in the afternoon and evening. She can eat by mouth but not a whole lot. We have to supplement. She has a nebulizer for breathingand I check on her throughout the night. I give her some physical therapy by exercise and massage. She communicates with expressions and her hands because she doesn’t talk as much anymore.
How did your life change with this experience? Did it leave an impact on you?
When my mom first got sick, my dad and I would stay at the hospital with her. I would take the night shift, my dad would take the morning, and my sister would take the afternoon. When my mom came home, we also had family support in Sacramento.
It was difficult being the only caretaker for so long at first. I’d mostly stay at the hospital and do most of my work from there. I did mourn the loss of my youth. For example, I didn’t get the entire experience of being a grad student, and I felt guilty sometimes for trying to do fun activities.
I feel like I grew up very fast, almost from being a 20-year-old to a 40-year-old.
There was nothing too different, but I need to be extra careful about bringing anything home. My mom is immunocompromised bc she’s on heavy steroids. I have to be careful about what jobs to take because of interactions with the public.
What sources of support do you have currently?
My mom has been really lucky- she has gotten so much familial support as well as external resources and support. We've got all the medical equipment we need for her. That said, there still are some gaps within the support/resources that I have found that are incredibly important, not only for the person I care for but also as a caregiver.
I do have support from my family. In the beginning we were still learning. We had my aunts come help with my mom’s daily care, and they also helped out when I wanted to go somewhere. They give me a lot of emotional support and validation. Now that we have a routine set, we don’t need as much help.
What are some sources of support that you would like?
A problem we have faced is that physical and occupational therapists are only allotted a certain amount of visits by the insurance. But for someone who has been in bed for 4-5 years now, 6 weeks or 6 visits is not enough time to make progress. Without that speedy progress, they aren't allowed to come back. If we pay for physical therapists out of pocket, the people we've found are also not willing to continue sessions because she isn't making progress fast enough. We just need someone willing to work with her. Even if she isn't able to walk again, she still needs some form of consistent physical therapy- which is super important for her limbs to not get atrophy. So they continue to have flexibility and give her a better quality of life. I've been giving her physical therapy myself every night- it helps her fall asleep. But I'm not a physical therapist, I'm not an expert in that field, so it would be nice to have an expert come regularly to work with her.
In home care is also very important.
While we've been lucky and have had almost all the home services we've needed, we've struggled to find certain at home resources.
Luckily we found a massage therapist through a recommendation from someone we knew. We also needed a dentist for her; we kept taking her to dental offices but they were such wastes of time! Many dental offices do not have equipment to do x-rays and examinations on someone in a wheelchair. There aren't many at-home dentists and doctors. My mom now has both, but it took a while to find the right dentist (the at-home doctor wasn't too difficult, but we found him on our own). During the time we didn't have one, my mom was in a lot of discomfort. Had the insurance company updated the in network provider lists, we might have found an at-home dentist sooner.
I’d also like to have more understanding from my community. I feel like because I'm trying to have a life outside of being a caregiver, some people, especially in the Desi community, think I have it easier. I don't. It's incredibly difficult to maintain my relationships and hobbies outside of caregiving. It can be a hurtful sentiment sometimes.
While others think I get to enjoy the other facets of life, I know that I don’t just stop being a caregiver because I'm not physically there with her 24/7. My mind is always with my mom, and I still direct family and doctors on how to care for her even when I'm not there with her.
I call my parents twice a day, everyday when I'm not home.
I don't look after my mom for some sort of praise, but I just wish people understood that the caregiver needs time too, and they're allowed to be more than just caregivers too.
I have a lot on my plate; I don't need comments and pressures from others to frustrate me further. I know that isn't what my mom would want for me. My mom didn't empower me my whole life, and educate me, to not do something with my education. I can care for her while also having a career, being a wife, being a mom one day, along with anything else I’d like to do.
It's harder, it takes more time- but I'm striving to establish my own identity and life too.
But having those other things in my life doesn't mean I don't care, work just as hard, or go through the same trauma that others do.
How do you deal with stress and do you do any self care?
I have been in weekly therapy since 2017, and I’ve had to train my brain to reduce my anxiety. I think allowing myself to ask for help is really important.
A lot of times, for caregivers, it’s really difficult to reach out.
I feel guilty sometimes because if I do something that’s not at home it feels like it’s wrong, but reaffirming myself and validating myself has really helped with that. Just taking 20-30 minutes to do something for myself really helps.
Did you ever consider a nurse?
We did consider a nurse in the beginning, and we’ve become more open to the idea. I try to think of everything. For example, I need to anticipate her needs such as when she’s hungry or thirsty. I interpret her hand gestures since she doesn’t talk as much anymore and ask her what she needs. In that way, it can be like taking care of a child. A
nurse wouldn’t be able to do that.
Are there any other resources or other support that would have been helpful?
I’d like to see more resources about caregiver burnout.
We need more education on that, especially symptoms of caregiver burnout. I was fortunate to have my therapist explain it to me but otherwise I would not have known about it. I was already in therapy, but for others who don’t know where to begin, it’s impossible to find what you need just by searching on the Internet.
Other than that, in-home care is really important.
Would you expect your children to take care of you in the future?
I would like to have them care for me. I think I would be a great, loving mom so I would hope that they would. Instead of placing an expectation on them, I would try to just raise them to do the right thing. They don’t have to give up their entire lives but I would want it.
You don’t have to lose everything in your life just to be a caregiver.