Leaving the hospital after a spinal cord injury is a huge milestone—but it can also be an overwhelming process.
In a 2024 Hope Talk, we asked three members of the spinal cord injury community to share their tips and insights on making this adjustment.
View the full recording here, and find some top advice from the panelists in the blog post below. Scroll to the end to see helpful checklists from one of our panelists.
Funding Your Journey Home
If finances are standing in the way of your transition from hospital to home after a spinal cord injury, turn to our nonprofit Help Hope Live for trusted medical fundraising.
Learn how we can help here, or click below if you’re ready to apply for medical fundraising assistance.
Top Tips for the Hospital to Home Transition After SCI
The tips below are from Ed Hoey, father of Help Hope Live spinal cord injury client Patrick Hoey.
“I wish I had started planning sooner.”
Patrick was in the ICU for one week after his spinal cord injury and transferred directly to inpatient rehabilitation for eight weeks.
As Ed explained, in the first three weeks, there’s a lot of shock and a process of grasping the emotional aspects of spinal cord injury.
There is holistic healing in place at the hospital as a team supports you or a loved one’s needs and recovery. At home, you can work to build a network of support that can continue that holistic healing.
Your first step is to start the planning process with learning, brainstorming, and keeping track of needs.
Keep track of your questions.
Document the questions you have and start getting answers as early as possible. That process will allow you to cumulatively build a plan for comprehensive and long-term support as you or a loved one returns home.
See examples of these questions from Ed at the end of this post.
“It’s not going to be perfect.”
The goal is a safe transition. You may not have every item and pathway you need for the future in place right now, such as home modifications, but focus on the immediate priorities while letting a longer-term plan evolve.
“Every minute is precious.”
Spinal cord injury survivors and their families will need to prepare for a very different future, so watch, learn, and absorb all the information you can while in an inpatient environment.
“Advocate for help.”
Recruit people to help with your transition planning – both at the hospital and at home.
It helps to have one person who can manage and document care at an inpatient facility and another person to manage the transition plan at home, especially if you don’t have two immediate family members who can do these things simultaneously.
“It took major renovations, but you have to have a place to live first.”
Ed explained that he and his community started considering home renovations during the second week Patrick spent in the hospital.
They considered the fundamentals for wheelchair access, such as the width of the doorways and the accessibility of thresholds for wheelchairs or power chairs.
Keep in mind that you will likely have to come home and make do with what’s realistic until you’re ready for larger-scale accessibility upgrades or renovations.
Adapt as you go: in Patrick’s case, they significantly modified their hygiene routine until they had an accessible bathroom in place.
“Look at what’s working in the hospital – and replicate that.”
Simulate the hospital environment in your planning and brainstorming when possible, including where you might need space for supplies and storage and how the environment reflects modifications to account for accessibility.
“There is potential.”
Over time, you’ll find gratitude that you or your loved one is alive, and that gratitude will help open you up to the feeling that there is hope and potential for the future.
“It’s stressful, no matter how prepared you think you are.”
This transition is not one you can do “perfectly.” Lean on the support system you have and be kind to yourself. There will be learning and mistakes but focus on the positive and the future.
Celebrate every small win along the way, and view each stage in your journey as temporary and part of a larger process of moving forward.
“Accept that your vision and your expectations for the future are different.”
In truth, the future was always going to be different than you imagined–your child’s future or your future probably would never have turned out exactly as you planned or anticipated.
However, it’s still a heavy and emotional process to work through, for you or a loved one or both.
Certain experiences may also trigger emotions as you or a loved one anticipates how different life will be after injury—in Patrick’s case, it was seeing friends going out and doing things he could no longer do without care and planning.
But as Ed explained, “just because the future is different doesn’t mean it can’t be amazing.”
“Opening up has compounded our feelings of gratitude.”
You have to put yourself out there and share personal parts of your life to get support and fundraise.
Ed said that accepting that openness and learning to accept help with gratitude “has been transformational for us as a family.”
“You’re part of a small spinal cord injury community with incredible resources.”
Reach out, meet people, and connect—and keep in mind you can reach out virtually and on social media as well as in-person.
“Fundraising with Help Hope Live has lifted a tremendous burden.”
Don’t wait to start fundraising. It can lift burdens financially and emotionally for a spinal cord injury survivor and their loved ones.
“Take it one minute at a time until it’s one hour at a time until it’s one day at a time.”
The quotes below are from Josh Basile, Esq., a Help Hope Live spinal cord injury client Ambassador.
“It was the best spinal cord education I could ever receive. You’ll learn how to speak spinal cord.”
Josh was in the hospital for two-and-a-half months following his injury. He advises anyone in his position to absorb as much as possible while immersed in the world of spinal cord injuries in a hospital or rehabilitation environment.
“Document it. Take videos.”
Take the time to document as much as you can about what you learn.
Transitioning home can be an overwhelming process, but you’ll want to hold onto the insights you gain and revisit and implement what you’ve learned.
“Focus on what you can do rather than what you can’t.”
Participate in and celebrate the little things you can do. It will help you to avoid getting into a mental state that pulls you down instead of lifting you up as you adjust to this new life with paralysis.
“Going home was a weird feeling—I was terrified.”
For Josh, there was comfort in knowing there was 24/7 nursing care in a hospital environment. That created a big mental shift as he got used to the feeling of relying on caregivers at home instead.
Along the way, accept and expect that there may be immediate emotional challenges to face as you move from one environment to another.
An example Josh gave was seeing his sports equipment when he returned home, which reinforced the reality that this injury had dramatically changed his life.
“Being a lone wolf in the spinal cord injury community is a scary proposition.“
Embrace the help you receive. You have a chance to “welcome beautiful people into your life” to offer you not just immediate assistance but also mentorship and hope.
“Nobody will fight harder for you than you can fight for yourself.”
Be willing to try, get creative, and see barriers as something to get over instead of an ending point to where you want to get to.
“Find your voice.”
Look for ways to express your emotional state and cultivate mental and emotional strength. In Josh’s case, a poetry class helped him come to terms with his injury and begin to visualize what he wanted from his future.
“You are not alone. You are strong and united.”
Know that no matter what you experience, you are part of a strong and supportive spinal cord injury community—always.
The tips below are from Kelley Brooks Simoneaux, Esq., Help Hope Live board member, pictured seated in her chair above.
“A lot of what was relayed to me was about what I couldn’t do.”
Kelley struggled hearing so much about her future limitations after injury from some of her medical providers. But with time, she found with certainty that “living a full life is very possible.”
Don’t allow anyone else’s concept of what’s possible to define your own.
“The timeline is not your own timeline.”
Kelley was in the hospital for two-and-a-half months, including two weeks in the ICU and two weeks in outpatient rehabilitation.
She explained that you’ll experience roadblocks during your time in the hospital that delay and alter your mental timeline of when you want to get home, including health issues to manage and potentially fighting with your insurance to get what you need to make the transition.
Accept that your timeline for returning home is not fixed in place, and you’ll have to be open to changes and delays for your wellbeing.
“When I went back home, I was able to make the transition back to what I wanted to do: living life.”
Embrace the help your inpatient team offers to get you as active as possible as soon as possible throughout your time in a rehabilitation or hospital setting.
For Kelley, it was daunting at first to experience so much physical movement and instruction as she was still adjusting to “a broken body.” But each of the challenges and instructions that her team offered her ultimately led to greater independence when she returned home.
“The goals of your rehabilitation program may not be your mental goals at that time.”
You may realize your mental and emotional goals are not the same as the goals that your rehabilitation program is prioritizing to get you to live at home again safely.
You can continue to visualize the goals you have for your recovery. Know that you’ll be able to continue cultivating those goals once you get home.
For home modifications, start small.
Kelley’s family brainstormed the modifications they would need to make to allow Kelley to physically enter her home and have a place to rest her head.
They started with the immediate barriers: Where can we put a bed on the first floor? Where can we add a temporary ramp in areas where we don’t have a long-term solution for access?
“Don’t get cut out of the conversations.”
Many other people and advocates may be involved in planning for your transition and access. But in the end, you are the one who will be physically accessing those things as you return home.
Become your own advocate and believe in your voice and your right to have a say.
“Take your motivations for what they are and go for it.”
Kelley ran for junior class president from her hospital bed. Learn what motivates and drives you during your recovery process, and embrace where your own unique motivations take you.
“You’re going to make a lot of pivots. They will lead to an unexpected but fulfilling path.”
Hospital to Home Sample Questions and Supplies Checklist
Ed Hoey offered a list of sample questions to ask as you begin to absorb the information you need to plan for both short-term and long-term transitions after a spinal cord injury:
- Where will I Iive when I leave the hospital?
- Do I need ramps or widened doorways to return home?
- Who will be my primary caregiver?
- Will I have outside help with caregiving?
- How will I get home, to a doctor’s appointment, or to outpatient rehab? Who can help me arrange accessible transportation?
- How do I call for help in an emergency? Is there an alert system for my town (e.g. ambulance company notification)?
- Where and how will I wash, use the toilet, and get dressed?
- Who will care for me overnight if I require turns, skin care support, or hygiene care?
- How will I eat – who will prepare my meals?
- Who can help with laundry and housekeeping?
- What equipment will I need ? (See Ed’s sample list below)
- How will I manage my medications?
- Which doctor will order my medications?
- Which pharmacy will I use, and can they deliver medications to my home?
- What is my insurance information?
- Who do I call to get answers or support surrounding these questions?
Here is Ed’s shortlist of supplies to have on hand or prepare to purchase after a spinal cord injury:
- Accessible bed
- Accessible clothing
- Ace wraps
- Catheters, urine bags, catheter leg strap, lubricant, enema
- Hoyer lift
- Manual chair
- Power chair
- Power chair accessories (charger, seat cushions, etc.)
- Sheets and towels
- Shower chair
- Skin cream
- Wheelchair gloves
Fundraise for the Hospital to Home Transition
As Hope Talk panelists always remind our listeners, fundraising with Help Hope Live is a key pathway to accessing the care and equipment you need to heal, live, and thrive as you transition from hospital to home after a spinal cord injury.
No matter where you or a loved one is right now in a spinal cord injury journey, learn how medical fundraising with Help Hope Live can help.
Access additional spinal cord injury resources, including sources of financial grants, in our hand-vetted Injury Resource Directory:
