Request for help, information, shared experiences -- about strokes.
[I'm leaving this sticky, for obvious reasons. Everybody's help is appreciated! UPDATE There are new posts beneath this post, CMike suggests I say. --lambert]
A very good friend had a stroke on Sunday afternoon, and I found him when I got to his place for dinner that evening. It was too late to try the blood clot busting drug, which is best in the first hour and isn't used after the third hour. All we had to go on was when I last spoke with him about the dinner menu on the phone and when we foung him, but it was beyond the time for using the drug. I then recalled there is such a drug and time is of the essence for its use. But I didn't know about the time limit, and thus didn't know why the ER docs were so insistant on my pinning down when I last spoke with him. I don't know if the drug is uselss after three hours or actually may cause damage.... I might have lied had I known the facts...ao maybe it was good I didn't know...?
He had severe muscle weakness on his left side, vision tunneling, slurred speech. His leg is very strong now, the arm getting better, but he cannot swallow and got a stomach tube, a PEG, yesterday. His vision is somewhat better but still tunneled (looking directly at his room number sign, he had to turn his head to see the 4 digits; otherwise, he sees only half of the digits, those on the right.
What I would appreciate from the Corrente community is any suggestions on what books I could read to help figure out how to help him with rebab. Also, I'd appreciate hearing about shared experiences any of you may have had with friends or relatives. And, lastly, are there any really good web sites and web chat/support groups which I could try.
I have been spending a lot of time at the hospital since his short term memory is not functioning now, and, while he's fully there to answer questions, he doesn't remember what he said or what was said to him. Is that nature's way of helping the stroke victim to avoid the utter darkness of their situation?
I also do not have any health proxy for him; fortunately, he was adamant about saying to the ER doctors and others that I should be talked to about what procedures they have in mind for him, etc. Didn't remember saying that, but would repeat it But, that means i have to be there to have the medical personnel see me with him, see him say they should talk to me.
He has two living brothers half a continent away, but both of them are mentally highly unstable, with one much more bipolar than the other and both alcohalics. He has been firm that I am not to tell them about his stroke. Know anything about any legal aspects to this?
He's too young to meet the SocSec full payment requirement already in place and too young to meet Romney/Ryan's or Simpson-Bowles-Obama's ideas that everyone somehow can work long into their 60's before being eligible for Medicare. He's a living example of what can happen should either of the parties get their wishes with SocSec/Medicare and mess it up big time*. He is still employed, but I've been told rehab take about a year before he could go back to work. He loves his job, but this may be too long a time for his employer and Hh may be forced into retirement or onto disability....
Anyway, I'm his spokesperson and memory for right now. It's not easy to get info, altho' the nursing staff on her floor and several of her doctors know that she views me as her spokesperson.
The social worker told me that he is not considered cognizant enough right now to fill out a health care proxy form, and I haven't been able to find his health care directive form yet. But, I understand I can be named proxy on a temporary basis, which I would prefer because I believe he will get much better.
Anyone know more about strokes? About stroke recovery? Suggestions -- on a proxy or for helping him to get better? He now told me to call some friends, so that is a change from his initial don't call anyone request to I could call some people, but no visits to some visits would be OK. His cardiologist said brief visits from as many different close friends as possible provide additional stimulus and would be very good for helping the brain to recover, but to try not to tire him. I just try to be there and to answer his questions, help him practice scanning, etc.
I have to talk to his neuro docs; that is my next goal.
It's awful to be with someone dying for a drink of water when he can't be allowed anything by mouth. There are little sponge swabs, but they don't help much....
*Yes, I do realize anyone on the cusp of age requirements is disadvanted if something terrible happens prior to meeting the age requirment. For SocSec there is disability and Medicare, but, still.... And sometimes that can take a long time to be accepted for.