After my burn injury, my husband and I were surrounded 24/7 by nurses, doctors, therapists, and other care professionals who took care of everything for us in the hospital. What we didn't think about was that once I was discharged, we would have to take on all those roles ourselves.
No matter how long you've been in the hospital, the transition to home might be exciting and terrifying all at the same time. To help you better navigate this transition, I've reached out to the burn community and compiled stories, advice, and information for you to take this important step.
My parents were totally ignorant of their ability/right to advocate for this situation, and the family was evidently unprepared for the intense treatments and maintenance required for my homecare."
- Dennis Gardin, burn survivor
Just before you are released from the care of your burn team, you may work with the hospital team about what home life will look like in regard to your current physical needs. This might include at-home care teams, outpatient therapists, and other providers who can assist with this transition.
Talk to your care team about at-home health care, a service often covered by insurance companies. The home care team is composed of nurses, PT/OT, social workers, home health aides, etc. The composition of the team that will support you depends on your unique needs.
The idea of finding at-home care as a 29-year-old burn survivor both infuriated and frustrated me. I had no idea what to expect with a stranger visiting my home and was provided with a list of at-home providers my insurance would cover and told to select one. In some cases, this may be provided for you, but before navigating the at-home care or aide experience, my biggest piece of advice for this time would be don’t be afraid to ask questions.
Consider asking questions like:
Have you had experience caring for patients with skin grafts or burn wounds before? Would you be willing to stay in communication with my burn care team – including video chats if appropriate?
What does your schedule look like? How will you and I come up with a schedule that meets both of our needs?
How do you handle supplies required for my medical needs?
Once you select a home health agency, they'll schedule your first visit. An admission specialist will assess your function, your medications, your burn wounds, your support systems, and more. Plan to ask what to expect from various members of your home care team. Likely, you will get visits from the home care team only a few days per week, which is different than the daily care that you received on the burn unit – and one of the main goals of your home care team is to increase your and your caregiver's comfort and independence with your care.
—Carlos Ward, burn survivor
One of the biggest pieces of advice I can give as a survivor would be that what may have been easy before may not be easy right now.
My husband, Tyler, went by the motto, "We'll do whatever it takes to keep you safe and comfortable." Another helpful tip I received shortly after returning home was to think outside of the box. Pants don't fit your swollen/bandaged legs? Get larger ones. Shoes hurt too much from rubbing against your scars? Wear slippers. If it doesn't work—consider reaching out to other survivors for suggestions or looking for an alternative option.
—William "Chip" Crawford, burn survivor
In addition to supplies used to make things easier, medical supplies are needed in excess during this time. Thankfully, our hospital sent us home with enough supplies for a few days, which allowed us time to figure out where we could get the volume we needed.
To start, we searched for local medical supply businesses that could support the amount required for my wound care. You may also want to ask your provider for a script to be able to access these types of facilities to purchase volume supplies. Once we understood what was required, we began searching Google and Amazon for bulk options that could ship within a few days. In addition, we spent a few minutes speaking with our doctor for suggestions we could use and purchase. Although a "gauze pad" seems like a straightforward requirement, we began to familiarize ourselves with brands we liked better than others with each dressing change.
If you're having trouble paying for supplies or insurance doesn't cover the cost, it can be challenging to know where to turn. Here are a few ideas:
Stay in communication with your care team. If one supply type isn't covered by insurance, perhaps a different one will be. Don't be afraid to ask for alternative options. They may also have access to coupons or sites that offer the supplies at a discount.
Reach out to a regional foundation and ask if they know of any supply resources.
Reach out to Phoenix Society for Burn Survivors – as a connector for the burn community, we may have ideas or resources that can help.
Insurance may or may not cover the cost of assistive devices such as walkers, a taller commode seat with armrests to help get on/off the toilet, etc. In good condition, pre-owned devices can be an economical way to meet your needs. Just be sure to have the device checked by your care team to ensure it's safe and in good condition, and sanitize all equipment before using.
Check with family and friends – they may have or know someone that has a device that is no longer being used or can be loaned for a period of time.
Online listings – places like Facebook Marketplace or Craigslist are great sources for used equipment.
Community service groups – organizations like the Lions Club, Salvation Army, VFW, etc. often will collect and store used equipment to loan out.
Consider posting your needs on social media – often, word will get spread on what will help with your recovery, and someone will have what you need.
We've all been there. You might be so happy to have returned home only to realize how exhausting (whether a caregiver or survivor) the process of recovery actually is. You're in what seems like days on days of dressing changes only to take off a bandage that looks like it hasn't come close to healing.
—Lauren Grove, burn survivor
During my moments of anguish, I was given the advice to track my progress. This might look different for every survivor. For Lauren and myself, it meant taking daily pictures of our wounds to see improvement over time. This might also be journaling or asking a caregiver to remind you what you can do now that you can't do yesterday.
As a survivor of a kitchen accident, it took me several weeks before I was even willing to be in my kitchen. For me, physically walking into my kitchen was a victory worth celebrating.
Feeling overwhelmed? Most survivors agree that the biggest advice during this time is to BE KIND TO YOURSELF. Practice mindfulness, or find something to make you laugh.
In my darkest hour of one of my darkest days, I reached out to Phoenix Society for Burn Survivors for help. My husband and I were exhausted, and the itching was uncontrollable. I remember looking at my husband and thinking, I can’t possibly be the only one dealing with this.
I joined my first virtual support meeting that following Saturday. I vividly remember jumping on that call just to see what they could do to provide answers to our many survivor questions. I felt relief—knowing someone finally understood what I was going through. As a caregiver, my husband also felt relief knowing he wasn't alone, and I had a friend or two who understood.
With advice from Phoenix Society, my husband and I quickly learned that we had to be our own advocates and speak up. We needed to voice concerns and not be afraid to ask lots of questions. As a survivor or a caregiver, you must advocate for your own journey. If something doesn't feel right—trust your gut and ask questions.
As a survivor, communication with my caregiver was vital. Even on the days where I wanted to do nothing but scream and cry—I let him know it was just a "bad day." As a caregiver, Tyler never backed down. Even on the days I had it rough, he was there to cheer me on or just be there to listen and not fix.
Tyler learned what worked for me and my journey. Here are just a few of the things that came out of our journey:
Dressing changes were both long and sometimes quite miserable. To get through, here are a few tips:
A distraction during changes. We watched every episode of The Masked Singer or found something on Netflix to binge on.
Have a plan for mealtime. After hours of changing dressings, we were both tired and did not want to make dinner. Pizza delivery became our go-to.
During times of intense pain of fear of the unknown, music became my motivator and my means of focus.
A little encouragement went a long way. I'd been active in yoga prior to my injury, led a very busy lifestyle, and one of my biggest fears was not being able to get back to what I knew and loved. Just a few weeks after I returned home, Tyler knew I needed all of that. He'd help me work out a plan for returning to work on my terms and would put me on a chair in front of the TV to do yoga.
Give yourself a goal. I wanted to succeed, and I wanted it to happen overnight. The truth was, it wasn't going to. I set micro-goals to help motivate me to move forward.
Throughout all of our ups and downs—Phoenix Society for Burn Survivors and its community of fellow survivors were there to cheer me on. There were some weeks I just didn't have it in me to talk, and others where I didn't want to join virtual peer support chats, but after I did, I'd always feel less alone.
You, my friend—survivor, supporter, or caregiver—are not alone. Every survivor's journey is different, but we all share one common theme: a need for support and resources. When you're ready, the burn community is standing by to help.
Amber Wilcox is a burn survivor, yoga instructor, and marketing professional from Ormond Beach, Florida. After her kitchen accident in 2020, Amber faced burns on 20% of her body from a hot caramel spill. After two skin graft surgeries from Orlando Regional Burn Center, Amber experienced hypertrophic scarring and underwent a series of laser burn surgeries from Tampa General Hospital. As the Marketing Lead for Phoenix Society, Amber enjoys helping a the burn community and expanding the reach of the organization's services. When not marketing, Amber enjoys volunteering for the Phoenix Society as a Peer Supporter, teaching yoga for Kula for Karma supporting youth in Florida detention centers, or providing free yoga for peers on her website, yogaamber.com.