Experts agree that the best way to support a person who is recovering from a stroke is to help provide tangible support to the family members (rather than to the patient). Those most in need of help are the people (spouses, children) who are often suddenly blindsided – and catapulted into a caregiver role overnight.
Remember that the stroke patient is being provided with the necessary support in the hospital. Family members, on the other hand, are required to take a crash course on what comes next in a medical emergency. If a close relative is even allowed to visit the patient given restricted and geographically variable visiting policies in 2020, the role of the hospital staff is (and should be) to provide acute care for patients.
This fact presents an opportunity for extended family and friends to step in and fill an important void.
Helping Families of Stroke Patients in the Hospital/Rehabilitation Centers
Create a Give InKind Care Calendar. Consider the kinds of things that can be farmed out to those offering to help. Are there pets that need attention? Plants to be watered? Mail to be collected and sorted? If a patient is younger, are there childcare issues to address?
Keep in touch with the family. While many hospitals have curtailed visiting hours in 2020, these restrictions will gradually be lifted. Call the specific hospital to learn more. If visitors are allowed, offer to visit. If visitors are strictly limited or not allowed, ask about using Zoom, Facetime, or Skype. The deficits caused by stroke are variable. No two strokes are alike. If you know a favorite book of theirs, grab a copy and offer to read aloud in person or via Skype. Some people love to be read to – it is a pleasure to share – regardless of age or illness. You may also consider audiobooks as well. If they are binge-watchers of shows on Netflix, make sure they have a device that streams and do a Netflix Party so that you can watch together even if you can’t be there in person (this works for people who live far away too). If a patient will be frustrated by the typing chat function, keep Facetime on, and comment whenever.
Gift boxes can be sent to people in rehabilitation centers if visitors are not allowed.
Helping Families of Stroke Patients Who Have Returned Home
Be with the family for as long as the recovery takes. When a patient is back at home, more opportunities present to be helpful to both the patient and their family support team (it is important to note that strokes can occur in people as young as 40 and extend to the very elderly so the specific needs of families are highly variable).
Don’t be afraid of the stroke. Understand that a patient may be frustrated – and family members may share this frustration – and even be angry at the situation. As a friend or non-immediate relative, there are opportunities to change the vibe of a household. Or at least, to diffuse some of the intensity. When you are there, don’t be afraid of the stroke. Be a friend. Don’t let them isolate. Do the kinds of things you always did before, but find the necessary (if temporary) ways to modify these activities. Did you enjoy meeting for a movie? Try streaming a movie from home.
Remind them of the progress made. A speech pathologist who works with stroke patients noted that it is easy to catastrophize a stroke. Think about taking videos on day one and every few days for the first eight months. Eventually once a month will do. In this way, patients can see the progress they have made.
“When people say ‘my life is over, I’ll never get better, I’ve made no progress,’ I remind them ‘you were on a feeding tube and we thought you might die. Now you are home, you eat everything, and you are just having trouble with word finding." They don’t remember.”
– Speech Pathologist, Stroke
Help primary caregivers with practical things. Offer to coordinate rides, order grocery deliveries. Make sure to factor nutritionist suggested dietary changes into shopping lists. Help to clean the house, or do the laundry. If it is possible to hire a cleaning service and a laundry service, these are also incredibly helpful.
Spend time with the patient so that a primary caregiver can take some time to attempt self-care. At home, a caregiver lacks support for the patient care they had in the hospital. Texts to check-in, specific offers of tangible assistance, and offers to visit – all of these help in ways that can truly support a family facing a major — but not insurmountable — challenge.
Anticipate how medical appointments are working where you are. 2020 protocols are different in some areas for the time being. Offer to call the doctor’s office, the physical therapist, the occupational therapist to see what, if any paperwork must be filed before the appointment. Learn whether there are different entrances. If the patient is not permitted a family member or an advocate, learn how to connect via Zoom so that everyone can leave the appointment with a clear understanding of goals and plans.
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