A caregiving journey: when family takes care of family

By Sonia Basuroy

Life before caregiving

My family is very close-knit. I’ve never moved farther than 30 minutes or so from my parents, our family home for 45 years.  And there were two good reasons.

My parents were/are my rock and I loved the area where I grew up. I never wanted to leave. I’d visit them once on the weekend and my mom and I would talk on the phone every day after I got home with the kids.

They also helped so much with our kids. My husband traveled frequently in the early years of our marriage up until my kids went to high school. I was the primary parent, dropping them off and picking them up after school, cooking, doing homework with them, doing activities, volunteering, etc. There were many times both of us couldn’t, and that’s where my parents stepped in. Helping each other out is part of our family culture. 

I never had to worry about my parents. They were fully independent. They had friends and family who lived close by. My mom retired from her job when she was 60, right after I had my daughter.  We would travel every year, away from home, but we didn’t have to worry about my parents given their independence and community.

Becoming a caregiver

In 2017, my mom got shingles which unfortunately developed into encephalitis. The fluid in her brain caused her to lose her short-term memory/cognitive skills.

I had never considered my parents old, until that event that started my caregiving journey. My mom was 78 and my dad was 80. Between their sharp minds and independence, I never realized how much my parents aged! 

Post-discharge, my mom required 24-hour care. It was devastating for all of us because although my mom suffers from other chronic issues, it affected her entire personhood. She wasn't the strong, independent, remembering-everything-mom that we knew. We struggled to find help and my dad and I became overwhelmed quickly. I was working full time and would travel to their home between work and kid duties, often spending the nights with mom. It became unsustainable.  We eventually found help, but that was an exhausting period.

Fast forward another year. My mom ended up in the hospital again and then again. She would have a medical event every 3-4 months that would prompt hospitalization. After discussing it with my husband, we told my dad it was time for them to move in. He agreed. He was scared and tired.

The transition was difficult for everyone. I drop everything for them at a moment’s notice because there is always another issue to deal with.  I do all of their chores and errands, and make sure to take them out once a week, usually to eat or to visit family. I worry about them constantly, and I can’t just stay away for hours. I haven’t taken a vacation in almost 4 years. My downtime is going for a few hours out with hubby and sometimes the kids, or getting together with friends once a month. We don’t really have friends over, and that’s not to say it’s because of them, but I feel it would inconvenience them out of their space. Usually, it’s family that visits.  I don’t get to plan anything too far in advance because almost always, something happens. I no longer feel comfortable being away for too many days. The most we’ve done is gone for the weekend and that’s only if my brother can come up to stay with them

I basically have to “fit” in my life around my parents. Any extra time away, or anything that doesn’t involve them, I have to schedule. My free time isn’t really mine. Most of the time it’s working on my business but there are times it’s just laying on the couch and doing something mindless. 

Reflections on my experience as a caregiver

It’s a true statement that taking care of aging parents is like having kids again. I constantly have to watch over everything about my parents. The conversations are always around activity, exercise, diet, doctor’s appointments, doctor’s advice, medication, what not to do and what to do. Sometimes it’s about the good old days or my parents missing their home(my childhood home) which they lived in for 45 years!  They are set in their ways, and so I have to be the “parent”, which bothers me at times. I’m exhausted by the conversations sometimes, and the repetition of requests (stop eating this, don’t do that alone, etc.). I can’t leave them alone overnight. I’m not able to just get up and go. I have to work around their routines, appointments, needs, etc. 

That they are safe and content is what brings me joy. My dad who has never shown emotion, tells me constantly how much he appreciates me and that I am taking care of them. And he’ll tell anyone who listens.  It makes me tear up because those are truly words I thought I’d never hear.  Three generations under one roof is a joy and a challenge, but my kids get the benefit of seeing us live together in harmony, knowing their grandparents, hearing stories, and learning about how they lived their lives which includes leaving India, moving to England and having the courage to move again to the US. I see the respect in my kids’ eyes when they hear about the journey. They’ve learned culture and tradition. The joy is knowing that my kids are learning that this is how we take care of family. 

I talk about the trials and tribulations of being a caregiver all the time. It takes strength, perseverance, patience, understanding, empathy, and courage. One thing I have come to terms with is that they will die one day. I never wanted to think about that when I was younger but it’s part of life and I know it.  In the meantime, I will do everything in my power to give them a happy and productive life while they are living. I will not stand to hear the “just let me die” conversations which happens more often than I care to hear. Nope. They will live life until they don’t. I used to be scared to think about my parents dying, but I realize that is a waste of time. I must make sure they smile and laugh every day. That is my goal. 

I respect and acknowledge the selflessness that clinicians provide every day in their work and mission of keeping patients healthy and alive, but, I also constantly have to insist they include me in the conversations. Maybe it’s not something that has been taught or covered in their training, but this has to change. We, the caregivers, are equally a part of the patient’s lives, not just in charge of medications. I am disappointed in that regard, that we are only included as the “interpreter” between patient and provider. 

I know all too well the hardships families go through when they become caregivers.  My mom did the same for her parents, as my children may do for me someday. My suggestion is to have a mindset of patience and love, not resentment. This isn’t their fault, aging is a part of life. I never feel or want to feel resentment, rather this is the right thing to do. That makes a huge difference even during the toughest times.

My learning lessons as a seasoned caregiver

If I could sum it up, here is what I’d share:

It’s a commitment 

Your life will be disrupted and sometimes your mind too. It weighs heavy

Be flexible

They don’t want to do the things they used to, and many times can’t. Coming to terms with that will make living with them easier. They want their own things in the house. I have an eclectic style now — a lot of kitchenware my mom likes to use and the couch is packed with my dad’s magazines, books, shawls, foot cream, etc (you get the picture)!

Be patient

They don’t live like you. They don’t like the same foods, entertainment, maybe even conversations that you do. Sometimes you have to give up a few things like watching TV in the living room because they need to watch their own shows(lucky I have a few other TVs)  :) 

Be open

There are a lot of differences in behavior and adjustments need to be made. Think toddler-proofing parts of the house look like a senior care facility. It’s important to be open and honest. I tell them things that bother me, not in a hurtful way, but I need to say things, to set boundaries. It’s more for me to get it out than for them to make any changes. They do understand though, I want them to be as independent as possible. I make that clear and try to make them feel good about themselves by encouraging them.

Be ready

Be ready to know the way you live now will change drastically.

I mean ready to listen to some weird conversations,   My parents love me and are so thankful. Sometimes the conversations start as a “we appreciate you so much” but end with a “woe is me I’m such a burden”(maybe that’s a cultural thing) I just nod and try to make them feel as wanted as possible. 

You may also see some things you don’t want to see.  Helping with bathing, eating, cooking, and cleaning up…it comes with the territory. I try to just do these things more as a provider than as a daughter. It’s necessary.  Again all of this is with love. I can’t have it any other way.

Don’t neglect yourself

There may be occasions when you will be so knee-deep in, running yourself ragged, it will take a toll on you very quickly. There was a time very recently, when my dad was in the hospital, and I was in such a fog, I was doing everything on autopilot. I could feel myself going numb and the thoughts were so jumbled in my brain, I had no idea where I was or what I was doing.

It’s important to take some time for yourself. Enlist help! I have my family, but from time to time, I will ask my brother or one of my mom’s siblings to come and sit with my parents so I can leave for a bit. My hubby and kids have stepped up too. I’m so grateful for them.

About Sonia

Sonia is a seasoned healthcare consultant with 15 years of experience in the hospital space. She has held many roles between two of the largest hospitals in Northern California including managing a health and wellness program that catered to over 1000 physicians. After leaving the corporate world in 2019, she went on to founder her consulting business which helps private practices streamline, automate, and increase revenue. She is especially focused on women physicians. She has been married for 28 years with 2 children and an adopted chihuahua and of course, cares for her parents in her home.

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