Living with Paralysis
You’re Not alone.
Providing care to a person with paralysis is a job we didn't apply for! In most cases, it involves a drastic life transition that catches the entire family off-guard. It is daunting and isolating, navigating caregiving responsibilities. But we want you to know you are not alone.
The Arch Foundation was created to help fellow caregivers find a community of support, understanding, and a moment of relief. Our worlds center around our loved ones who’ve experienced a loss of mobility and making sure they are not only well-cared for, but thrive as they learn to live in new ways.
Oftentimes, caregivers lose themselves along the way.
Our main goal is to help you maintain your sense of self within our community. We are here to listen, share resources, build you up so you feel strong to advocate for other people, offer a laugh over a cocktail, and provide programming moments for you to take a deep breath for yourself.
Being a Caregiver
While being a caregiver to someone living with spinal cord injuries, traumatic brain injuries, or paralysis can be fulfilling, as it is a deep demonstration of love, it does not come without its bumps in a rough road. The job takes its toll. There are financial impacts and personal sacrifices. Caregivers suffer far more depression, stress and anxiety than the general population. Surveys show that up to 70% of caregivers report depression, 51% sleeplessness, and 41% back problems. It is essential to remember to take care of YOU in this transition.
Here are a few tips to help as you navigate your new normal.
Take Care of Yourself
Rule number one for all caregivers is to take care of yourself. Providing care for someone with a loss of mobility while managing all of the other responsibilities of adulting – jobs, running a household, parenting, etc. can burn anyone out. Regular health care visits for yourself can fall by the wayside, as you are already in the mix of medical care for your loved one. Respite breaks are essential, and there are resources available to help you take a moment for yourself while your loved one is being cared for.
The more stress you keep in, the more likely you’ll be to react out of frustration and it can hinder your decision-making abilities. Stress can also negatively impact your own health. The more you prioritize your own well-being, the more you will enhance your coping skills and stamina. By taking care of yourself, you’ll be better prepared to take care of others.
Reach Out to Others
Connecting with a caregiving community can help you learn and benefit from collective wisdom. It is important to know that you’re not alone in a role that can be exceptionally isolating. Caregiving communities offer a listening ear and a level of understanding, surrounding yourself with people who can leave the "caregiving conversation at the door", so you get an authentic moment to recharge yourself. It’s just as important to acknowledge you as a person and get a moment of reprieve through humor and camaraderie with others.
Many caregivers are so accustomed to caring for others instead of themselves, they often neglect to ask for help. Your family is your first resource, and a caregiving community can help lift you up when you need it.