Caregivers and support systems for stroke survivors come in many forms. You may be an immediate family member, second cousin, best friend, acquaintance, fellow church member, neighbor, or even a hired aide. No matter where or how your relationship started, you are here now and you deserve support, tips, and gratitude!
The best ways to support yourself as a caregiver:
- Engage in self-care
- Avoid caregiver burnout: share responsibility, take breaks, use respite services
- Prioritize your own safety as well as safety of the care recipient
- Use therapist tips to streamline caregiving
- Collaborate with the care recipient to prioritize your assistance
First and foremost, put on your own oxygen mask first. Try to remember that you can’t truly take care of or support someone else if you don’t first put enough energy into caring for yourself. Self-care means something different to each person, but try to consider things like getting enough rest, taking breaks, and even finding caregiver support groups so that you can chat and vent about the similar challenges you all encounter. The more you can plan ahead to protect yourself emotionally and physically, the better you are in the long run.
Avoid Caregiver Burnout
In the case of a person requiring round the clock supervision or many hours of care, make sure to check into caregiver respite programs that allow you the peace of mind to take breaks while the stroke survivor is being safely cared for. If the patient has several people on the support team, consider taking turns with these other folks rather than working simultaneously, so that you have time off. Caregiver burnout is a real thing, even if the support you are providing is mostly supervisory or emotional - try to find ways to avoid burnout if you can.
A stroke can affect balance, muscle strength, protective reactions, problem solving, judgment, and memory, reducing safety of daily task performance. Caregivers and members of the support system are often called upon to help manage safety concerns for care recipients by supervising transfers and other mobility tasks, providing steadying balance or physical assistance, or overseeing activities. Using good body mechanics, good preparation and setup for lifting or transfers, and planning ahead for how to approach a physical task not only helps the care recipient, but protects the caregiver from injuries as well
Use Therapist Tips
If you participated in caregiver training before discharge from the hospital, try to incorporate ideas the therapy team came up with to safely help the stroke survivor. Examples include: using assistive devices, bending down and getting close to the person before a transfer, counting 1-2-3 to initiate moving, modifying foods to be a safe consistency for swallowing, or removing distractions from the environment before a task is performed. It is encouraged to ask questions and take notes during training so that you can more easily transfer these concepts to use at home. Most therapists welcome use of notebooks, or even pictures, to help you remember all of the information before discharge!
Collaborate on Caregiving Goals
It may be beneficial to sit down with the stroke survivor in the beginning, and collaborate on a list of things that person truly needs help or support with. That way, you can prioritize what you need to dedicate your energy toward and what you can let go of, and the patient can maintain a sense of self-efficacy. If the person needs you to double-check that they organized a pill box correctly and paid bills on time, but does not need help getting socks and shoes on, don’t worry about those socks and shoes. It is very important for the patient to maintain autonomy and independence (safely), which can be taken as a positive for the caregiver who does not have to “do it all.”
Ultimately, there may be many ups and downs in your journey as a caregiver. Give yourself as much grace as you can, and know that you are learning new skills alongside the stroke survivor. Being a part of the stroke recovery journey as a support person is vital - you are important, even on days when you may not feel it. If you are doing the best you can to support the person’s own goals for recovery while also protecting your own needs, you are doing something right.
- Natalie Miller, OTR/LNatalie is an occupational therapist and health writer based out of Richmond, VA. Natalie recently pivoted into the pediatric setting after spending eleven years working in adult neurorehabilitation.