Image Credit: Getty Images / triloks
woman with multiple chronic illnesses, including multiple sclerosis, caregiving for her dad with cancer, in their living room

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 I was diagnosed with multiple sclerosis (MS) in 2008, my dad has been one of my primary caregivers. He's accompanied me during travel, driven me around, taken me to appointments, and helped with the shopping.

His generosity has no bounds. As well as helping me outside the home, he did all the household "heavy lifting", such as vacuuming and fixing things.

He's always been strong as an ox and healthy. Despite being in his 70s, he's continued to stay active, playing hockey at competitive league and international levels. People are astounded when they find out how old he actually is. He's my dad, my caregiver, my hero, my strength.

So, I felt like my world had come crashing down when he was diagnosed with intermediate-grade prostate cancer. I was quickly reminded that caregivers can become patients, and patients can become caregivers.

It’s not unusual for full or part-time caregivers to be managing their own illnesses as well as the health issues of their loved ones. Around 40% of family caregivers have one or more chronic conditions, and 33% report having a disability. Between 17% - 35% of informal 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 mum, 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 mum 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 clinically vulnerable” because of her medication for her condition. Consequently, we knew that Dad's care was something we'd have to do alone. Extended family and friends offered to help, but the risk of having "outside people" in the family home would be gambling with all our 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 currently 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 absolutely knackered. Dad's catheter needed emptying before I got him ready for bed.

I could barely keep my eyes open and was desperate for the loo, but I knew Dad was tired.

"It'll only take a few minutes," I thought. "Just hang on and be quick."

Halfway through the job, I lost concentration and knocked over the jug full of Dad's urine. Wee 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 overly tired or brain-foggy, I'm not the best caregiver I can be. I realised 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

Naturally, I was stressed and worried following Dad's diagnosis.

At times, everything felt overwhelming to the point of crisis mode. Juggling my own health and daily life alongside giving Dad all the support he needed was draining.

The toughest part was seeing Dad in his condition. Dad has always been a tower of strength, and he was my rock for years. 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, so they understood where I was coming from when I needed to let it all out.

3. Set reminders and keep medication diaries

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

This way, I wasn't confused about who needed to take what and when - especially post-surgery when Dad suddenly 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 early days post-surgery, it would take much longer than usual to help Dad shower. He was in pain, the catheter made things awkward, and he was generally slower because of his depleted energy levels.

As we got into a routine, my sister, Mum, and I started picking up on patterns and figured out ways to make daily duties more manageable. Dad's showers, for example, wouldn't be planned 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 caregiving circumstances

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

General caregiving tips were useful, but specific advice on caring for someone with prostate cancer helped most. 

One group was explicitly for ladies affected by prostate cancer. Most of the group's members are caregivers for someone with the condition, such as their partner, father or grandfather.

I have learned a lot from this group. But, most of all, I feel there's somewhere I can go for support and understanding if I need it. The emotional support from the group can be even more helpful than the advice and tips.

6. Have honest conversations with your family

Mum, 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 with each other allowed us to have constructive conversations about 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 - which, while validating, can also pile on the pressure to act calmly 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 recognising why this exhaustion was happening and addressing the issue.

The takeaway

Dad’s recovery from surgery has been going well. Our caregiving "role reversal" has enabled us to understand each other's perspectives in a way that wasn't possible before.

Many of us will have to go through being a patient and a caregiver simultaneously. I hope 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.

NPS-IE-NP-00455 July 2022