Your loved one has just suffered a stroke. You’re overwhelmed. What should you do, and when? In an effort to assist others who find themselves in this position, I’ve compiled a list of things I did, as well as what I wish I’d done, after the initial crisis. Keep in mind that this list constitutes my opinions based on my experience as a caretaker.
1. Get the best medical care available. Make sure a neurologist is on staff. Some hospitals don’t have one, believe it or not. If yours does not, transfer your loved one to a hospital that does.
2. Apply for Social Security Disability Income immediately, even if you think your loved one won’t need it. Benefits don’t start until five months after APPLICATION, not date of disability, with no retro activity.
3. Demand that therapy start as soon as your loved one is out of immediate danger. Anticipate therapy after hospitalization and start making calls as soon as possible; every facility will have a waiting list, and you want to get your loved one on it as soon as possible.
4. Do not be afraid to dismiss a therapist you or your loved one doesn’t like, for whatever reason.
5. Research treatment options; don’t depend on the experts to know everything. Find out if any clinical trials are running, or where the best therapy is for specific conditions, such as aphasia.
6. Create an email list of family, friends and colleagues so that you can communicate about your loved one’s condition and ask for help when you need it.
7. Create an email list, website or phone tree in order to corral help when you need, then don’t be afraid to ask. People want to help but often don’t know how. Tell them, whether it’s food, a ride to the hospital, someone else to visit your loved one so you can take a break, or just a kind word. Caretaking is a grind, and you may be doing it for a long time, so pace yourself.
8. Wallow in self-pity (aka express your feelings about the situation), but try not to act out; do take care of yourself. Exercise, eat well, don’t misue alcohol or drugs. If you feel depressed, ask your family physician to prescribe meds.
9. Read everything you can get your hands on about stroke: books, magazines, articles, both in print and on line.
10. Start a journal in which you can record events, as well as your feelings. In the chaotic aftermath of a stroke, you may forget things, so it helps to write them down. Also, sometimes you might not realize how you’re feeling until you write it down.
11. Anticipate what your loved one will need upon coming home. Ask the therapists what these might be: a handicap ramp; removal of rugs that might cause tripping; shower seat; etc.
I hope this has been helpful. If you would like a fuller account of my caretaking experience, please read my book, Stroke Happens.
Best, Laura Ann Garren

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