Learn the stages common to those who survive this medical emergency
When a loved one has a stroke, the reality of being a caregiver can seem overwhelming. There are many questions to ask, and it can be difficult to know where to start. Throughout the recovery journey, the caregiver and stroke survivor will likely go through several stages together, and the caregiver’s role will evolve as time goes by.
THE EARLY DAYS
During the early hours and days after a stroke, the survivor will likely be in a hospital setting. There, diagnostic tests and treatments will be given as quickly as possible. Throughout this initial stage, it is important for the caregiver to be a voice for the survivor and advocate for their best medical care. This means keeping an open dialogue with the medical team treating the survivor. Focusing on immediate needs can help — this may include getting a list of all of their current medications, allergies, and past surgeries, finding their health insurance card and arranging care for any children or pets the survivor is responsible for.
It is also important to find out if the survivor has a medical power of attorney (MPOA) authorizing a designated person to make health-care decisions for them. If not, making sure that someone is available to advocate for the survivor is essential. If the survivor is unable to make decisions for themselves, the person designated by the MPOA will need to, but it is important to remember to keep the survivor involved in the decision-making process as often as possible.
The first few days after a stroke can seem chaotic. Working with a hospital social worker who can help locate resources and discuss next steps can be helpful.
AFTER THE INITIAL HOSPITALIZATION
After the initial hospital stay, the survivor may be discharged to a rehabilitation facility or nursing home, or they may be sent home. During this early recovery period, caregiver self care is of great importance. It can be very difficult to strike a balance between meeting the needs of the survivor and meeting other responsibilities for work or family. Caregivers need to remember to eat nutritious foods and get enough sleep and exercise. Even a quick walk around the block can help the body and mind feel calmer and more grounded.
Setting up a “care team” can be very helpful for the main caregiver(s). A care team may consist of family, friends, neighbors, coworkers and health care professionals. This team can share the workload and allow the main caregiver to focus on the survivor’s recovery and their own self-care. Start by making a list of all of the people who may be able to help, and then list what they would be best at helping with. Some people may be very practical, and would be happy to do grocery shopping and driving to appointments. Other people may be able to help with child/pet sitting, making meals and doing laundry. It is also important to think about who can provide emotional support during this time.
Once the care team is in place, use it! Some people feel uncomfortable reaching out for help, even from those who have offered it. However, it has been said that caregiving is a marathon, not a sprint, so getting the support that is needed from the beginning will help prevent burnout and allow the caregiver to remain in good health.
As the stroke survivor’s needs change, the caregiver’s role may also change. There may be less needed of the caregiver as recovery progresses, or there might be more if other challenges arise. During this time it is important to keep an open dialogue between the caregiver and survivor. Caregivers can help their stroke survivor during this time by making any necessary home modifications and helping the survivor remember to take their medications in order to prevent another stroke. They can also help the survivor enjoy a healthy lifestyle with nutritious foods and exercise as they are able.
There are some common post-stroke conditions that may arise during the recovery process. These include aphasia, incontinence, cognition difficulties, fatigue and confinement (if the stroke survivor is unable to leave the bed). Caregivers should talk to the survivor’s medical and rehabilitation professionals to find the best ways to handle these conditions.
Most caregivers of stroke survivors step into their new roles suddenly and without preparation, and although it can be challenging, many people find it to be a rewarding experience. The National Stroke Association has produced a CarelivingSM Guide, which guides caregivers through the ups and downs of caring for a loved one who has had a stroke. They can also find support through the Careliving Community, an online social networking site exclusively for caregivers of stroke survivors. More caregiving resources can be found here.
Robyn Moore is CEO of the nonprofit National Stroke Association, the oldest national nonprofit 100 percent dedicated to stroke. Colorado Gov. John Hickenlooper named Moore to his Stroke Advisory Board to help shape the future of stroke programs. A native of Villa Park, California, Moore is passionate about stroke, having witnessed firsthand the impact of stroke when her own father experienced a stroke.