Caregivers need care, too

| Brenda Kong
“Cancer sucks.” Those are the only words cycling through my head as my body lays bedridden after a hectic week. My baby brother, who is 23, has Hodgkin’s lymphoma, also known as Hodgkin disease. I am 38. I have psoriasis and psoriatic arthritis. We’re both in our respective rooms, barely able to function.
 
There wasn’t much thought given when I took over the role of Jon's caregiver. I gave little thought as to how my body would keep up with the long hours, emotions and stress. My brother had been going to his appointments and tests in secret. He finally told us on a Tuesday night that he had to check into the hospital Wednesday morning. I said, "Well, I'm taking you," and that was it. I spent most of the next four days in the hospital with him. I didn't have time to think, I just did.
 
My psoriasis is affected greatly by stress; a flare can hit me two days after a stressful situation. My joint pain is worse, I have psoriatic arthritis in almost every joint of my body. This journey hasn’t been a picnic for either of us.
 
There’s a soft knock on my door. Jon is awake and hungry. I will my aching body out of bed to fix him lunch. Days like this, when my step is unsteady, my hands are weak and my body protests every movement, I continue to push even harder because he’s depending on me physically and emotionally.
 
Finding balance
 
Sadly, I ignore myself more than I should; I ignore my obvious pain and weaknesses in order to make my family’s life a bit easier. We’re all rallied behind Jon as he fights through this ordeal. His prognosis is a good one: 92 percent survival rate. We couldn’t be happier that his cancer is "only" a stage 2, though our happiness was short-lived when we saw how badly the side effects of chemotherapy affected him. 
 
I’ve stayed up countless nights, listening to him dry-heave from the nausea while catching two or three hours of sleep for myself. I’ve cooked, dealt with his insurance, driven him to and from appointments, run errands for him, been the liaison between his oncology team and our family, and I've been appointed his legal representative, all while putting my pain on the back burner. After a few weeks it really started to take a toll on me. 
 
“You cannot pour from an empty cup.” I repeat this mantra every time I feel stretched. I now take time for me, even if it’s just a few minute. I used to feel guilty, if I wasn’t moving every second of the day. I somehow felt useless. There was only so much I can do for my brother, though I understand now my manic movements were a response to not being able to physically take away his pain. 
 
When my “cup” is empty, I stop; I let other family members take over while I rest. I read, I’ll mindlessly play a game on my phone or I’ll do yoga stretches, anything to stop myself from stressing over the 50 million things I have to do.
 
One of my favorite moments of peace is when I’m doing mindful breathing. I try to do this two or three times a day and it really calms me down. I can re-focus and continue my day with a clearer head. Here’s what I do:
  • Start by sitting up or lying down in a comfortable position.
  • Take a few breaths to start.
  • Clear your mind, let go of everything weighing you down for these few minutes.
  • Begin by breathing deeply in for a count of five, breathing in life, joy and peace.
  • Hold your breath for a count of five.
  • Breathe out slowly for five counts, breathing out your stress, worries and struggles.
  • Repeat for 5-10 minutes.
It takes a village
 
I am not a superhero. Try as I might, I can’t do this alone. With the support of our other family members, close friends whom I can vent to, those who’ve been through our current struggle and those who check in on me with reminders to rest, I am able to continue on this journey with my brother. 
 
My life is a series of ups and downs dealing with my skin and joints alone; factor in a whole other person to care for with cancer and my life feels surreal. With positive thinking and keeping my emotions healthy, I am able to care for myself and Jon the best way I can. Currently Jon is starting his third cycle of chemotherapy. While the side effects are horrible, he remains focused on his health and future.
 
It’s a hard road ahead of us but one we are ready to face.
 
Request a booklet for your family and friends

The more your loved ones know about psoriatic disease, the better they can support you. Share this free booklet with your family and friends. It includes information on psoriatic disease, advice for talking about the disease and self-care tips so your loved ones can feel their best.

Photo credit: Rosalind Liberal

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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