4 replies to this topic

[LovingSister]

Hello

I think this is the best place to post this. I am caring for my brother who was shot on June 7th and has C5 incomplete damage. He is paralyzed from the chest down with no use of his hands.
I really need help. I took my brother in to care for him although I have a home filled with family, some of my grown kids, and grandkids most of the time. I am busy but we felt Ronny deserved better than a nursing home.
The problem is that he is "sick" all the time. I am really starting to burn out over this sickness. He keeps getting UTIs and then we get him cured and he is sick again in no time flat. But that isn't the worse problem. He is cold all the time and sweats. He is cold to the bone and we are keeping the heat so high to try to help him,it doesn't but he won't let me turn it down. He sees me near the thermostat and freaks out. His room stays at 75. We pile blankets on him. He calls me all the time to wipe the sweat off of him or to change his clothes because they are wet with sweat. We get him up (no easy task) only for him to feel sick and want to go back to bed in an hour. I want him to feed himself but in the bed this is almost impossible. I am not heartless, quite the opposite. I know this is much harder on him than it is on me but I am getting burnt out, I'm tired, my house is disorganized. He cries and apologizes. I cry with him. I don't know what to do to help him anymore. I have said many times that caring for him is actually easier than I thought it would be, it's this constant sickness that I cannot handle. I feel useless and helpless. Isn't it enough that he is paralyzed? How unfair that his life needs to be so miserable with all this other crap thrown in. Do these neurological issues ever clear up, level out? What can be done to help him? He is just existing and it's becoming too painful to deal with. I got him on Terazosin and it does help a bit with sweating but not the rest of it

[JuanC]

hi

i use to have alot of cold sweats, and also use to lie under 6 or so blankets. for me it was a result of UTI's. I was even cold in an almost boiling bath. the sweating would never stop. you need to get his temp down first of all and get some antibiotics. I'm guessing a long course. then be sure to phone your doctor as soon as possible. i went for a bladder flush, and was on a drip for a week. my temp got so high that they threw wet blankets on me. I was ofcourse fighting and screaming at them. as soon as the UTI is gone, change his catheter to make sure all the bugs are out.... I strongly suggest you phone a doc, as I was told UTI's can be very dangerous.

Edited by JuanC, 07 December 2010 - 04:42 PM.

[my-sister]

i'm not sure this will help at all, but my sister had a lot of body temp regulation problems... we used to bundle her up in blankets, but i noticed that she would go from freezing cold to roasting hot after a while... so we broke out a scarf (even in the summer) and that seems to help her... she can feel a chill setting in and we wrap her neck in a scarf and that keeps her warm enough
also, consider buying one of those eden pure space heaters and just use it in his space for the added warmth that he may need (it will save money and the rest of the family from the high temps in your house)
just make sure that if he wants to cozy right up to it ~ that he stays far enough away so that he doesn't get burnt...

i realize that your brother is facing different things than my sister.... but i thought i'd share the idea in the event that it helps you guys out

Edited by my-sister, 09 December 2010 - 11:57 PM.

[S&W Winger]

Space heater! I cannot stand a lot of blankets, etc. piled on me, and the space heater with a remote control is perfect for me...

Sounds like his continuous UTI's are leading to some AD issues...

But what I would like to suggest is relief for you and more professional help for him...not sure of his financial situation/insurance/etc., but see if he has benefits for home health...also, depending on his income, perhaps MedWaiver could save your sanity and allow him to remain home and not in a nursing hell/home... MedWaiver is a federal program administered by each state, so availability and ease vary...have you checked into help? I do not recall from your earlier posts...


Does he have private insurance? Mine covers 200 visits per year of in home CNA/nursing/PT...have you exhausted ALL sources of help? Keep looking...for all of your sakes...


It took several weeks of IV antibiotics along with 4 days in the hospital for my last UTI to begin to subside...this is just part of all this...also, have you looked into the condom catheter for him? The suprapubic may actually create more problems, but cathing for him must be difficult around the clock...

SO I am icy cold and sweating right now...just turned the heat on (house, as it will be cold even down here) and will soon have the space heater aimed at me...

Please take care and keep us posted...

[Tetracyclone]

It seems there is a problem with his medical care, given the on-going UTI situation. My own conclusion when UTIs reoccur quickly is that the same bug remains and is training itself, treatment after treatment, to be resistant or immune to antibiotics.

Here are the matters on which you should insist:
He gets a C&s (culture and sensitivity) test of his urine before treatment and about 3 days after the course has ended. At this point, whatever antibiotic they give him is going to be very strong/rather toxic. This in itself will make him sick or tired.

The urine test report will show antibiotics with a sensitivity number next to it. Only those with low numbers are going to be effective, and they are likely to require injection or drip. I'm guessing this from his history. He needs to understand that his life and feeling good enough to bother depend on mastering the care of his bladder, including drinking lots of water. A guy his size may need 3 quarts a day, I'm not sure. I drink 2.5 to 3 and I am only 112 pounds.

One possible route to take, which is not that much more bother, is one both Millard and I have gone to. It is the use of an antibacterial, Mycrocyn, to flush the bladder. I had a bug that was developing antibiotic resistance so after 2 different antibiotics, when the infection returned I went to this bladder flush system. You can read about it on http://sci.rutgers.e...ad.php?t=133414

I felt that, with the new "superbugs" making their way around the globe, I had better find a way to manage infection that does not require antibiotics. Also, irrigation was used in the 60s to avoid infection, until the AMA insisted everyone move to using antibiotics.

One study I read said irrigation with saline solution worked just as well, and I am experimenting with this. Vetericyn is the Veterinary version of this product and somewhat cheaper. Same stuff. The thread posted above is 51 pages long so if you prefer to talk to me, send me a private message. Also, the thread includes a lot of evangelical sentiment re microcyn, which one must ignore. The product has its downside, just like everything else.

I know you are maxed out with responsibilities, so I hope your brother develops an interest in managing his own care (at least the intellectual and decision-making part) soon.