Support for the Caregiver: What to Do when a Caregiver Gets Sick - The Mobility Resource

In May, when I realized I would be having surgery, my husband Barton and I went through a myriad of questions and concerns. Not only were we planning for my surgery, but we also needed to take into consideration the care Barton would need, living with Cerebral Palsy.

In my case, we had a lot of time to plan out logistics for the care we would both need. But life’s circumstances may come up in the future where I may need more immediate care.

Here are some tips to consider:

Asking the Hard Questions
When we found out the time of surgery I may have could change in the middle of the procedure, which came with additional risks, we spent time talking about the hard questions, the questions we typically do not want to discuss. What if something happened to me during surgery? What if the type of care I needed was more extensive than we planned? What if I died? We talked through many “what if” scenarios.

Since Barton is my husband, I wanted him to be able to make decisions about my health care in the event I couldn’t. Sometimes, the health care community may or may not recognize those decisions form a person with a disability due on bias. I took additional care to express my wishes through a Power of Attorney and Living Will form, specifically dictating how my husband’s decisions should be taken seriously and the best form of communication.

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At the hospital, while we were going over paperwork, I also verbally communicated how, in the event I could not make decisions, Barton was my health care agent.

Direct Care Providers
Due to lifting restrictions, I needed to take a break from helping Barton out with his care. We worked with individual direct care providers to assist him with his needs. Be prepared for the interview process, what qualities are you looking for in a direct care provider, and training so that they know what to do. In addition to his care, they provided light housekeeping such as washing dishes or laundry to help me out as well.

Delivery Services
Depending on location, grocery or meal delivery and online shopping sites became a great resource. While these services can come with delivery fees, they became an important resource when I wasn’t able to drive.

Community Resources
In addition to direct care providers, family stayed with us for a few days directly after the surgery. Friends and colleagues helped by bringing us meals and even arranged transportation for us. If you have any dietary restrictions, be sure to communicate your needs. An online calendar is a great tool that can help community members schedule meals and additional needs.

The Importance of Self Care
As a wife with an amazing amount of energy ready to jump back into the swing of things, I had to let go of the broken washer, the battery that needed to be replaced for the van, the broken mug. I had to let it go of all the other logistics. My job was to heal. If I did not heal properly, I would not be able to get back to a normal life schedule.

While I was used to taking care of others, this was the first time I needed to put myself first. Before surgery, I said “no” to many things throughout the year to create the space I needed to take care of myself.

During surgery, I brought my iPod to the hospital, asked for what I needed, spend time recovering on the back porch during the fall, read affirmations, walked when I was able to, watched movies and took naps.

Being able to focus on my health care allowed me to heal faster, and for us to jump back into our everyday lives.

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