PSP HELL HELL HELL

Charles fell again today! He has a UTI and was on CIPRO which caused hallucinations (or was it the UTI?) new meds today and he's wild. Thinks he can walk. Fell into the wall and broke the oxygen machine, have a new one now. Don't know what will be next. Hospice can't seem, or want to, understand PSP. ie: Cipro can't be given to people with neurological disease.

Charles blamed me to the nurse and then said he was sorry to me. This isn' t new to anyone on this site but it sure breaks my heart. I didn't think we'd have dementia.

When the antibiotics end on Sunday we will see. If he simmers down ok but if not major decisions may have to be made. The impulsivitiy is the major problem, brain says "I feel good, therefore I can do ....." but he can't.

Tonight he said "it's bad, it's bad. He knows but now what?

Cuttercat

16 Replies

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  • Hello Cuttercat. I don't have any words of comfort - I don't know what to say but for what it's worth I hope you don't have to make those major decisions just now and I'm thinking of you. X

  • I am so sorry for you and Charles. Just from my husband's experience, he had two UTIs and went to emergency and urgent care. Both gave him cipro. Did not help had to go to a urologist who tested for which bacteria was causing the problem. It wasn't e. coli which is why cipro did not help. Retested and found a Proteus mirabilis urinary tract infection that is resistant to ciprofloxacin and sensitive to keflex. Since he started on high doses of Vitamin C in March he has had no problem. Could the solution be so simple? I hope so.

  • OOH I like your perspective

  • I can relate entirely. I've been going around and around with dad all day, can't understand most of what he is saying though. While nothing has been broken, I was told "you can leave now", he lives in my home.

    His right arm is pretty much locked in place now but he has ok movement in the left. Now his left arm is showing signs of "alien limb", hallmark in CBD, by pulling his convene(catheter) off twice today.

    Never a dull moment..

    Ron

  • So sorry you had this bad day - thinking of you and hoping for a better one tomorrow :)

  • Get him off the unsuccessful drugs....and if it makes you feel better, B was much more well behaved for others but not for me,,,,and no sorry's from him.....get him over the UTI....CC then be ok with decisions,,, maybe he can stay home.....ask him what's bad; if he cannot tell, you give him some questions he can answer : is dinner bad; is you behavior bad; is how you feel bad is; your disease bad...... he probably needs to talk about it......another person other than you maybe an easier way to get his emotions out...... I am not the one to answer this....

    keep on keeping on cc

    God bless you

    AVB

  • Aww dear I'm sorry your having to go through Cuttercat! Life with Psp is so incredibly shit all round, and oh so stressful!! Sending you a massive hug x

  • So sorry about your troubles. UTI's are terrible. My mom's Dr. Tells us PSP sufferers tend to have a constant struggle. We've been giving mom a supplement of Cranberry capsules once a day since her last UTI a couple of months ago and it seems to be helping.

  • So sorry you are having a tough time on top of the usual s-*** of PSP. Had no idea Cipro was a prob for PSP thanks for the heads up.

    Hope it all settles down a little soon

    Look after yourself

    Xxxxx

  • Cipro is usually the first choice for a UTI. Never heard you can't use it for someone with a neurological condition. It usually starts to improve things after about 2-3 days. But your health care provider should of taken a sample of the urine and be conducting a culture at the same time you start him on the Cipro, just to make sure it's not resistant to it. About 50% of the time, Cipro worked for my wife, but the other times it took a different antibiotic to clear the infection. The UTI can definitely cause bizarre behavior, so I'm sure that's what's causing a lot of the extreme behavior issues. Once that clears, hopefully things will get much better.

    My sympathies to you. Been there, done that. And I know it can be draining on the caregiver. Stay strong and know despite whatever they say and do, they truly love you and this is just the disease. What you're doing is the greatest showing of love a person can show for another. May God bless you and comfort you.

    Ketchupman

  • You made my point better than I. The doctors should test before prescribing. That would have saved my husband a lot of misery.

  • Yes, but since it takes about 3 days for the culture to reveal the results, they usually go ahead and start you on something. But doctors get over confident and skip doing a culture. I always insisted on doing a culture due to past history of my wife's UTI's.

  • Hi Ketchupman, how are you keeping? Nanny857x

  • Hanging in there. Staying busy with work keeps my mind off of my Kim. And family keeps me busy too. Just had my 4th grand baby. So wish Kim was here in person to enjoy them but I know she is up in heaven watching over us. You doing alright?

    DAN

  • Yes I'm doing ok. You have caught up with me then, I've four grandchildren too. Keep hanging in there.

    Lots of love x

  • Thank you dear one. Thank you.

    Cuttercat

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