Caregiving for Aging Parents When You Have a Chronic Illness

Patient Expert

When you have a chronic illness, it can be enough of a challenge to get yourself through the day. Somehow, we add spouse, kids, work, maybe even occasional socializing to the mix. And if you are in your 30s and up, you may also find yourself having to take care of your parents. We are called the sandwich generation — right in the middle of raising children and providing care for aging parents. This is hard enough at the best of times, but adds some unique challenges when you have a chronic illness.

My story

I was only a few years into effective treatment for my rheumatoid arthritis (RA) when my mother had a bad accident. My first worry was for her, the second that I wouldn’t be able to be there for her. Although I had finally found a medication that worked for me, I was still very much recovering, and my mother had been my main support, helping with freezer meals, grocery shopping, cleaning, and other chores. Now, from one moment to the next, I not only had to take responsibility for helping my mother through several months of surgeries and rehab, but had also lost a caregiver.

It was a complete reversal of the roles we’d had for decades and was a difficult adjustment for both of us. But I learned a lot about taking care of an aging parent when you have a chronic illness.

Your chronic illness is a strength

As we age, we tend to accumulate more health problems and this is often when you as the child of an aging parent need to step in. It is also where your chronic illness makes you uniquely qualified. You know how to navigate the health care system, how to make an aching body comfortable, and how to use your self-advocacy skills in advocating for others.

In my situation, we discovered that I was really good at being the point person with the health care team to get information, as well as get my mother the care she needed while she was hospitalized and when she went home.

Don’t be proud, ask for help

Don’t expect to be able to do it all yourself. Reach out to family and friends to set up a support circle that takes advantage of individual strengths.

Put together a list of different tasks and share it around so everyone can choose what they can do best. Expect that you may have to be the captain of the group, sending out reminders so everyone knows when to do what. This can feel like extra work, but in reality it will save you time and energy that you can use to take care of yourself.

The yellow oxygen mask rule

In case of emergencies on a flight, the yellow oxygen mask will drop down. Flight attendants tell you to place it on yourself first and secondly on someone who is depending on you, such as a child or a person with a disability. Selfish? Not at all. If you pass out from lack of oxygen, you’re no good to anyone. The same applies in life on the ground. You can’t take care of your parent if you don’t take care of yourself first.

It’s easy to lose yourself in responsibility, but that’s a recipe for disaster. Tune into your own needs and give yourself the support that will help you help your parents. Remember that taking care of your chronic illness is the biggest yellow oxygen mask. Take your meds, exercise, eat a healthy diet, get enough rest, and practice self-care. It may also be a good idea to reach out to your health care team and ask if there are ways they can support you to have the extra energy and ability you need.

You are (still) Superwoman

When you have a chronic illness, it can feel as if you have lost the part of yourself that effortlessly juggled the tasks and responsibilities in your life. Taking care of aging parents reminds you that you still have it. You might be doing things differently, enlisting others to help instead of doing it all yourself, but knowing that you help your parent get the support they need can make you feel like Superwoman all over again.

For me, being able to help my mother get the care she needed, take care of her finances, and support her emotionally at a time when I thought I was too weak to take care of myself was a revelation. It made me realize that I was much stronger than I’d thought and that together, my mother and I helped each other through an evolution in our family roles.

See More Helpful Articles:

Caring for the Caregiver: an Interview with Leeza Gibbons

Self-Care Is Not Selfish

Caregiving with RA: This Is What We Do Now

Lene Andersen is the Community Leader for HealthCentral's RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.