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woman with chronic illness caregiving for her father

When You're a Caregiver with a Chronic Illness

Reading time | 6 mins
Trishna Bharadia shares 6 tips for caregivers managing a chronic illness as well as their loved one’s health.
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Since my multiple sclerosis (MS) diagnosis in 2008, Dad has been one of my primary caregivers.

His generosity has no bounds. He's accompanied me during travel, taken me to appointments, and helped with the shopping.

He did all the household "heavy lifting," such as vacuuming and fixing things.

Everyone thought he was strong as an ox and healthy. Despite being in his 70s, he's continued to play hockey at competitive levels. People are astounded when they find out how old he is. He's my dad, caregiver, hero, and strength.

So, when he was diagnosed with intermediate-grade prostate cancer, my world broke. I realized how quickly caregivers can become patients and vice versa.

It's not unusual for caregivers to manage both their own illnesses and their loved ones'. Around 40% of family caregivers have one or more chronic conditions, and 33% report having a disability. Between 17% - 35% of caregivers rate their health between "fair" and "poor," with health declining further after caregiving for a year.

Caregiving is not an easy job, nor do we live in a fair world. Still, with my mom, sister, and I all involved in Dad's care, we managed to get by despite adverse circumstances.

Everything changed overnight

Two months of intense research followed Dad’s diagnosis. Dad, accompanied by us, was in and out of the hospital. Then came the decision on whether to pursue radiotherapy or surgery. Both options would involve Dad needing at least some care, which would fall to me, my mom, and my younger sister. We all live with long-term conditions, so we needed all hands on deck to help each other.

We were also contending with being in the middle of the COVID-19 pandemic. All of us were and are "vulnerable" to the virus. My sister is classified as "extremely vulnerable" because of her medication. Consequently, we knew that Dad's care was something we'd have to do alone. The extended family offered help, but "outside people" at home would risk everybody's health.

It's been tough. Taking on Dad's care after his surgery was mentally and physically exhausting. We also had to take on all the household tasks that used to fall on him - like cleaning, vacuuming, and more.

So, how did I cope with managing my MS, taking on Dad's responsibilities, and caring for him?

Here are my top tips for managing caregiving when living with a long-term condition.

1. Work your own symptom management into the routine

The two MS symptoms I contend with most are fatigue and bladder issues.

I soon learned that doing anything overly taxing with Dad's care wouldn't work if I was shattered or needed a wee. 

One Saturday night, I was shattered. Dad's catheter needed emptying before I got him ready for bed.

My eyes wouldn't stay open, and I was desperate for the loo, but I knew Dad needed sleep too.

"It'll only take a few minutes," I thought. "But be quick."

Halfway through the job, I lost concentration and knocked over the jug full of Dad's urine. It splashed over Dad's feet and soaked into the carpet. If I'd gone to the toilet and cleared my head first, I wouldn't have spent the next half an hour cleaning up.

After that, I didn't make the same mistake twice. If I'm strung out or brain-foggy, I'm not the best caregiver I can be. I realized that factoring my MS fatigue into the daily caregiver routine was vital. Focusing on the task isn't something I can take for granted!

2. Have an outlet to avoid emotional burnout

After Dad's diagnosis, everything felt overwhelming to the point of crisis mode. It was draining, juggling my health with giving Dad all the support he needed. 

The toughest part was seeing Dad in his condition. Dad has always been a tower of strength. Seeing him like this made me want to cry and cry for him.

So, I did. And it helped.

I also made sure I had someone who wouldn't mind me venting. I'm fortunate to have close friends who also live with long-term conditions. They understood and supported me when I needed to let it all out. 

3. Set reminders and keep medication diaries

I set reminders on separate devices, so neither Dad nor I forget our various medications. I also used a treatment planner and ticked off every dose as I doled them out.

This helped clarify who needed to take what and when. Reminders especially benefited us post-surgery, when Dad had to take lots of new medications. 

4. Find a routine that works for you, then stick to it

Some days would always be more tiring than others.

In the days post-surgery, it would take much longer than usual to help Dad shower. He was in pain and moved slowly, plus the catheter made things awkward.

As we got into a routine, my sister, Mom, and I figured out ways to make daily duties more manageable. Dad's showers, for example, wouldn't happen before or after a grocery delivery.

Because so much of the household deals with fatigue, unpacking and putting away can be hard work. Adding an energy-zapping shower to the mix wasn't workable or sustainable. Instead, we have plenty of breaks before and after physically demanding jobs.

These are minor adjustments, but it's incredible how the little things can help.

5. Find specific support for your circumstances

I've always been active on social media as an MS patient advocate, and I'm part of many online support groups.

General tips were valuable, but specific advice on cancer-focused caregiving helped the most. 

One group was explicitly for women who cared for someone affected by prostate cancer.

I have learned a lot from their support. But, most of all, there's somewhere I can ask questions or vent if I need.

6. Have honest conversations with your family

Mom, Dad, my sister, and I soon learned the value of open communication.

From the outset, we were clear with each other about how we were feeling and coping. If things became too much, we said so. All of us have our own conditions to contend with. Being honest allowed us to have constructive conversations on how to move forward.

That's not to say we didn't argue with each other or get frustrated. Tempers can and will fray when you're exhausted and not feeling 100%. Caregivers are often presented as superhuman. While flattering, this can make us feel guilty if we're not calm and stoic 24/7.

In truth, we're all human and can be as irritable, upset, tired, and frustrated as everyone else. More so. What was important was recognizing the exhaustion and exploring possible solutions.

The takeaway

Dad’s recovery from surgery has been going well. Our caregiving "role reversal" means we understand each other in a way we couldn't before.

Many of us will go through being patient and caregiver both at once. Having some coping strategies will make that experience the tiniest bit easier. It's never going to be a walk in the park, but we can do this.

The information presented is solely for educational purposes, not specific advice for caregivers. Please consult a professional who can apply best practices and appropriate resources to your situation.

NPS-ALL-NP-00739 JANUARY 2023