4) She needs rehab, a lot of it! Speech therapy (for thinking as well as language issues), occupational therapy (for every kind of self care and practical and job-related activities), and physical therapy. Maybe residential rehab that offers these therapies, ideally one that specializes in strokes. Maybe in-home therapy. Just to give my husband as an example: he spent one month in the neuro ICU of a general hospital, then one month in acute residential rehab in a brain injury rehab section of a different general hospital, then one month in subacute residential rehab (just a nursing home with the three kinds of therapies I mentioned), then home with one month of in-home therapy (same three kinds), then there was a hiatus until I could get him into outpatient rehab 3, then 2, days a week at a nationally known rehab hospital that treated many brain injury patients. (We dropped occupational therapy at some point.) He did outpatient therapy for 6-7 months. Then he started working again on a very limited, unpaid basis and quit therapy. (The work WAS therapy.) It was very hard for him but little by little he regained about 95% of his former abilities. He still works only as a volunteer (professor) but that is partly because of disability rules. He is capable of real work now, but not quite at the same level and definitely in lesser quantity than before. So this is what your wife needs. You need to figure out how she can get it.
5) Do you have insurance that covers her? If so, it should cover these things. If not, is she covered by Medicaid or Obamacare? FWIW,once she gets on SSDI (aka "disability") she is automatically enrolled in Medicare two years later (but it doesnt cover everything). Is there any place, like your town, that has a social worker who can help you figure these things out?
6) You need help from stroke experts as well as peer support from people who caregive stroke patients. There is a medical specialty called "physiatry" -- ie rehab doctors. If you could find one who specializes in stroke, that could be a good doctor to oversee your wife's recovery. For me, a private Facebook group for spouses of TBI patients was a real lifesaver. I got a ton of TBI expertise from people there, which strengthened me. I found this website to be a treasure trove:
Traumatic Brain Injury - TBI & Head Injury Resource | BrainLine.org . This one might be a starting place for you. I am sure there are others.
National Stroke Association | Stroke.org
7) Some sort of respite for you is essential. I found a health aide at my husband's nursing home who was willing to give me 7 hrs/week for 2-3 months (I paid $15/hr in northern NJ). I found that most health aides work second jobs so it may not be hard to find one through another health facility. 7 hours doesnt sound like a lot but it meant grocery shopping, walking the dogs, even seeing a friend... it meant sanity. So so important during the time when my husband was a danger to himself, falling twice a week, amnesiac, irrational, and unsafe if left unattended. Gradually he got better and I no longer needed the aide.
8) Counseling/neuropsychology-- you all may need it -- wife, kids, you. Could be togethet or apart depending on your needs. A catastrophe like this impacts everyone so profoundly and changes relationships. Neuropsychologists specialize in people with brain problems; some also work with the families. They also do formal "NPEs" (neuro-psychological evaluations, a multi-hour battery of cognitive tests) that help pinpoint the areas of damage and where therapy should be focused -- also helpful for proving injury to get or keep SSDI. But you might get the help you need from someone with other credentials.
These are the main things I can think of now. Sorry if I sound bossy - it is from trying to say a lot as fast as I can. I know this is a living hell for you and your family. Please take care of yourself and feel free to send me a DM if you have any private questions or comments. All the best to you and your family - Godspeed.
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