Advice For New Caregivers To Loved Ones With SCI

7.16.2018
Written by
Whitney Bailey
Written by
Whitney Bailey

Caring for a loved one after a life-altering event can be intimidating. The team at AbleThrive asked a group of caregivers of people with spinal cord injuries to share some advice for new caregivers.

Illustration of men and women stick figures holding hands. The two figures in the middle are in wheelchairs with children on the end.

Learn How To Ask For Help

One of the prominent themes in the responses gathered was that a caregiver should not be ashamed of learning how to ask for help.

Janet says, “Learn as much as you can about SCI, so you are prepared as much as possible for the “surprises” that will occur. And be willing to ask for help as a caregiver, or hear from others that are in the same boat. There’s always more to learn!”

“Make time for you from the very beginning.”

Caroline suggests to write down a list of things that need to be done for when someone offers to help you. “When someone says, let me know if I can help, have a list of to do things and ask which they can help with. It’s hard organizing your thoughts in the early days and weeks so enlist a good friend to assist you in delegating tasks.”

April says that individual downtime or you and your loved one is important. She says, “Train someone to take a few hours a week off your plate.” She suggests using the free time to sleep or go out with a friend. Make sure the person you train knows all of the needs of your loved one so they can do activities with them while you are gone.

Trust Your Gut

Always trust your instinct when it comes to your loved one’s health.

“Trust your gut when you think something is wrong,” says Kelly. She goes on to describe a health situation with her husband where she could tell something was wrong with him, but trusted her gut and waited for more symptoms to occur. After days of worsening symptoms, Kelly’s husband told her he was fine, but Kelly knew that was not the case. Kelly took her husband to the emergency room and found out he was sepsis.

She says, “If I had taken him sooner (the hospital) would have sent us home. I knew something was coming but had to wait for more symptoms. Trust your gut!”

Support System

Having a support system can really help caregivers.

Pat says, “You are not alone, even if you feel like you are. Join groups like this (Facebook) group to vent to ask for advice to chit-chat. It’s a bumpy ride.”

The advice is concluded with these motivational statements:

“Be proud of how you have grown (as a human being) and all you have learned. It takes a woman/man with a lot of grit to hold tight during all the sadness, sickness tiredness, etc. that comes along with SCI,” says Mary.

Jeff says, “Wake up each morning with a new attitude. I understand it is hard knowing what you have been through, but tomorrow morning is a brand new day. Be thankful and rejoice in it.”

Share this advice with a new caregiver!

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