my brother's late stage - TheBody.com's Bulletin Boards

Hi Georgia: I just wrote a whole post to you and it went >>poof<<... rats. Anyway, I know how difficult this time is for you; you sound like a very caring and concerned sister (and person) and I wish nobody had to go through this; neither your brother, you, or anybody else. My thought is that if your brother has encephalopathy/dementia and short-term memory loss and is still telling you he is living alone, he probably has one or more friends who are very involved in helping him out there locally. In home health is likely available to him as well. If his short-term memory fades more, he will remember long-standing relationships and events (like brother & sister) for a longer period of time/will retain those memories the longest. From the description that I have so far, it would surprise me if he is still living alone. If he is, you probably should begin preparing for that not to be the case (if that is at all possible). Most likely, your brother does have a 'circle of friends' for support where he is and, since the two of you are in contact and you are obviously very concerned about him, it would seem likely that he would tell you (or will eventually) if he has no one else to help (I'm sure he knows your situ. and doesn't want to be a burden on you and chances are he well knows what 'the future looks like' from here on out and is reluctant to tell you if you are to far away and can't help or he may have made a plan to go into a hospice/AIDs unit when he feels he's reached that place where he needs to do that. Karl maintained his mental faculties all the way to the end so I'm not sure what I actually would have done had he begun to not recognize me etc. (I tried to read and plan but thankfully things didn't go down like that); he could at least communicate his needs etc. and we had finally gone into the hospice just before he died so others were there with me to care for his needs for that last 2 1/2 days (and Karl could, until about 8 hours before) still 'call the shots' etc.. I have to tell you though that I had talked to a friend of mine whose brother died of AIDs and it was very different for them; her brother became very difficult to control and he couldn't remember anyone or his surroundings or anything/got combative etc.. Karl and I worried about that but, again, by the grace of God, that did not come to pass; don't get me wrong; it still wasn't pretty; but I think when it gets to that stage, and my friend said this as well, they put there son in a nursing home. Karl and I had in home nursing once per week and access to a few more services, but basically, when the final decline came on = it came on relatively rapidly (even still; even though I was right there; I was still so surprised somehow = wierd huh; because of the roller=coaster we'd been on I kept expecting Karl to rebound like he always had before (and tell me to get out of his hair - lol)sooo, you just don't know. All you can do is do the best you can with the info. you had. At the end he did not want his mother with him/it wasn't that he didn't love her/ that's just the choice he made probably so she wouldn't see him that way or whatever; I don't know; the thing is all you can do is keep calling and making yourself available and unless, God forbid, he loses all decision-making capability, respect his wishes and heed what he tells you. Again, Georgia, I am so sorry you are going through this; do you have other family members? Anyone closer in physical proximity to your brother? Is it possible that he has a partner (don't know if he is gay or not but considering all the possibilities) that may be looking after him that perhaps he hasn't shared about (this is not uncommon depending on the family dynamics about sexual orientation issues etc.). Please post again OK? I'll keep you and your brother in my thoughts and prayers Georgia (by the way, what is your brother's first name?) Best regards, Karla

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