Caretaking With Chronic Illness

Caring for yourself while caring for a loved one with a chronic illness or disability

There are many days when it doesn’t matter how you feel, the show must go on. In addition to managing our own conditions, many of us also have to take care of our loved ones, especially those diagnosed with an illness or disability.   

I am a mother of a child on the autism spectrum. The diagnosis of my son with autism came five years prior to my diabetes diagnosis. As a result of observing him experiencing sensory issues during preschool, his diagnosis was not entirely surprising. Our son began occupational therapy every week and he received an Individualized Education Plan (IEP) for school.

My son has made amazing progress on his journey. He achieved many fine and gross motor milestones. He is a scholar student and has graduated from an IEP to a 504 Accommodations Plan.  He will attend a new school this year and participate in a gifted program for language arts.

He has experienced setbacks, however, over the past couple days. Since then, he has had anxiety attacks, eaten very few foods, feared being alone, and has been having sensory meltdowns. His overwhelming fear is that things around him are moving nonstop and will soon explode. He had just been watching a YouTube video about how the universe would end.

The sudden occurrence has caught the entire family off guard. It is a waiting game in the house, since no one knows when the next episode will arrive. I am in the process of connecting with a therapist and his occupational therapist. 

The whole family has been affected, and I personally have been stressed out. Having to manage a chronic illness is difficult enough, but adding caregiving to the mix is extremely stressful. My son has been sitting, eating, and resting with me for the last few days, who is usually energetic but now won’t leave my side. Rarely does he play with his siblings. He hasn’t called his best friend yet. He won’t leave our room.

This is not the same little boy who was having a blast last week on our vacation. He’s not even the same one that was dancing and full of joy two days ago.  

Currently, I am managing both my own and his conditions.

It’s extremely hard.

It pierces my heart to hear him scream and cry in agony. We are literally counting the hours until we can call the pediatrician.

In the meantime, I am unable to eat or sleep well because I am so concerned about my son. Nevertheless, a wise psychologist friend I met today gave me some words of encouragement that I want to share with anyone going through similar difficulties: first and foremost, take care of yourself. If you don’t take the time to eat, rest, and manage your own condition, then you won’t be able to provide for those who depend on you.

It’s not easy to deal with chronic illness or caregiving, so when you’re ill and you’re the primary caregiver, it can be overwhelming. As a caregiver, you may be exposed to health risks due to the stress and demands associated with a serious health condition. When you are taking care of yourself and a loved one, consider these things: 

• While you are not feeling well, find someone to look after your loved one until you feel better. Respite care can also help you rest if the need arises. 
• If you have older children or adults at home, delegate certain tasks, such as taking your loved one to appointments, making calls, and preparing meals. 

Organize a plan to take care of yourself and your loved one if there is no one available to help. Keep it simple:

• Consider staying in the same room as your loved one. Ensure that the area is close to a restroom and kitchen for easy access. 
• Take advantage of the convenience of getting healthy foods delivered.
• Have a place where all medications and other medical supplies can be stored.  
• Take the opportunity to do some work or hobbies while your loved one is resting.

Being constantly responsible for someone’s care can be emotionally and physically draining, but you will do anything for someone you love. Don’t forget to love and care for yourself as well.