Perspective from a Caregiver

In recognition of Disability Awareness Month, Jackie Sykes CCAS’24 spoke to Rutgers University–Camden about her experience as a caregiver to a family member with a disability. Here is what she had to say:

What is the one thing you want people to know about your experience as a caregiver?

Being a caregiver has been and still is the best job I could ever have. My son was diagnosed with multiple sclerosis in 2004 at the age of 24. He had a student housing apartment and was working for Campbell’s in the daycare department. Unfortunately, by 2010, he was wheelchair bound. He could no longer walk or communicate.

What has enabled you and your son to navigate his disability?

I am grateful for all the training I received, the financial support he receives from Social Security, and the pay I receive from the state-funded Personal Preference Program. Because of the PPP, I was able to stay home to care for him. Also, thank God for Access Link disability rideshare. We are able to enjoy life because of this publicly funded transportation program for disabled individuals. I returned to Rutgers–Camden to obtain my degree in economics, and we can go out to enjoy life at the malls, restaurants, etc. Considering the circumstances, what more can you ask for?

What are the biggest difficulties?

There are challenges to being a caregiver. You can suffer from fatigue and burnout very easily. You must take care of yourself while caring for your loved one. If you do not, your body will shut down. Also, you cannot allow stress, anger, fear, anxiety, or depression to overwhelm you. These negative emotional triggers can cause you to have a breakdown, which you cannot do, because your loved one needs you.

What is your advice to others in caregiver roles?

Let me encourage you. You can be a caregiver and have a life too. I should know. I am a living witness. Find something that will motivate you mentally, emotionally, physically, spiritually, and financially. You can make it easy on yourself if you take the time to learn what it will take to make it on this journey. Be encouraged.