In 2005, after her husband, Don, had a stroke, Kathi Koll got a crash course in caregiving. She had cared for her parents in the past, but this was different.
"Our lives completely changed overnight," she says. Don couldn't move, breathe without a respirator, speak, or eat.
Koll, who now runs an organization that gives support to caregivers, quickly found herself making medical decisions, locating support, and finding in-home care. "It became a constant flurry of activity and needs," she recalls.
"What helped me was to really slow down and just breathe, to keep my mind clear, and keep things very simple," she says.
If you're caring for someone who's had a stroke, learn how to get the support you need while helping them make progress.
Find out as much as you can about your loved one's condition. Ask questions at the hospital and doctor's office. Get familiar with their treatment plan and medicine. Take notes.
At home, organize their daily medical needs. Make a list of medications and bring it to all appointments. Daily and weekly pill cases can help you keep track, or check out apps that help you stay organized.
Build a Team
"Keep a close relationship with your primary care physician and any coordinators," says Heather Duggan, RN, stroke coordinator for the Danbury Hospital/New Milford Hospital Primary Certified Stroke Center in Connecticut.
Your loved one, their doctors, and you are partners in their care. Talk about what happens next. Make decisions as a team. Keep family and close friends in the loop.
Be Ready for an Emergency
Know the symptoms of a stroke, such as a face that droops, an arm drifting downward, or slurred or strange speech. Get medical help right away if you notice any of those.
Ask emergency workers to take your loved one to a designated stroke center. "There is a real virtue in rapid transit to a hospital that has expertise in strokes," says Stephen Hoffmann, MD, a doctor in Framingham, MA. The paramedics can call the ER ahead so they're prepared for their arrival.
Watch for Depression
"It's a vulnerable time for patients when they leave the hospital," Duggan says. They may need time to accept what happened and adjust to life now.
If you notice signs that they are feeling down, talk to their doctor. "Depression is common and can hinder recovery," she says.
Be on the lookout for symptoms like these in your loved one:
- Depressed mood or anxiety
- Feels hopeless or guilty
- Loss of interest in activities
- Fatigue or changes in sleep
- Less interest in hygiene or sex
- Trouble concentrating
- Appetite changes
- Gets restless or irritable
- Has thoughts of death
Sharpen Your Communication Skills
After a stroke, your loved one may not be able to talk like they did before. They may think and hear clearly but have trouble communicating.
When you talk, be clear and specific. You don't have to talk louder, but speaking slower may help. Always be direct and honest.
Be a good listener. Try to be patient. If it's not working, take a break and try again later.
Modify Your Home
After a stroke, home is often the best place to be. That's because it's familiar and comfortable, Duggan says.
Make changes to make your home safer and easier to get around. Set up a bedroom downstairs. Remove area rugs. Pave the way for them to get up, turn on a light, and get to the bathroom safely. Consider getting a wheelchair ramp, stair lift, or an adjustable recliner or bed.
Encourage Them to Move
Movement builds strength and prevents stiffness. It also teaches the brain to learn new pathways.
"It's like the old saying: If you don't move it, you're going to lose it," Duggan says.
Organize Your Day
Koll kept a calendar of her husband's daily activities that included things like bath time, physical therapy, and visits from friends.
"If I had it to do over again, I'd block out time every day for myself," she says. "The caregiver needs to be on the schedule, too."
To carve out time for yourself, consider using adult day care, meal programs, home health aides, homemaker assistance, or short-term respite care.
Get Your Ducks in a Row
Make a checklist that covers logistics. Do you have transportation? What's covered by insurance? Are there legal, financial, and business affairs you need to work on? Do you need help with household chores and care?
Many families are surprised by the financial burden. If you need help, talk to an elder care attorney. They can help you understand issues about disability payments and social security.
Expect Highs and Lows
It's normal for your loved one to have a range of emotions. They may be upbeat and happy one minute, then sad or withdrawn the next.
Koll remembers emotionally charged moments. "Backing away and taking some time on our own always helped us to come back, apologize, and move on," she says.
Find a support group for stroke patients and their families. Connecting can help you feel less isolated, manage better, and learn from others' experiences.
Your loved one's doctor, hospital, or religious center can point you in the right direction. You can also find support online.
Over time, Koll learned the value of receiving support from others. Now, with the caregiver support group she started, the Kathi Koll Foundation, she's on the giving end. She helps people who don't always make their own needs a priority: the caregivers.