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Dad’s on hospice. He’s being forgetful and talking nonsense. Called the hospice nurse and suspected UTI. Well, hospice won’t do culture or urinalysis, but only call in for antibiotics (cipro).. he’s been taking it for 3days.. still not making sense and is forgetful. What should I do when the antibiotics course and over and he’s still not back to his old self? One week he was ok and normal, and by the next week he’s out of his mind. Being on hospice there are certain things we can or can’t do.. what am I to do if his confusion and forgetfulness is still there? I lived 2 hours away from him. I make time from work and kids to come take care of his medicine and other needs for 2 days each week. He stayed with my brother and their English is not great so every thing falls on me. I don’t have place in my house for him (plus brother house is his childhood home and uncle lives nearby). It’s sad to see dad losing it and it’s hard for all of us as kids to maintain our lives. Besides the confusion and forgetfulness, he seems to able to get around and do stuff around the house. Help?

If Dad gets so confused he needs someone with him all day & night, then it would be good to know what's going on. Ask the Hospice Nurse to arrange a medical review. Could be so many things (kidney function decline is just one). Even if the goal is Hospice comfort care, if his needs can't be met where he currently lives, then a new plan is needed. Either a lot more home care or transfer to hospital.

Sorry you are going through this.
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Reply to Beatty
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Nikki, do you have a good rapport with the hospice nurse? That is where these questions should be directed.
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Reply to BarbBrooklyn
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Nikki, how is your dad today?
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Nikki850 Oct 23, 2020
Well last Sunday they started him on cipro(2x for 5 days) . Nurse cane Wednesday and he gotten little better. Still talk some nonsense and forgetful but much lesser. They decided to try new antibiotic (bactrium??). I gave him one during the evening. The next day he seems a bit better but no completely “normal “. He complained of headache. Gave him Tylenol. Well next morning I asked how he doing , he said he’s having hard time getting the flow out. No pain or stinging, just taking longer peeing. He was fine a day before. Will that problem goes away once the antibiotic runs it course or should I be concerned? With my dad one day everything’s going great and the next day there’s always something wrong going on. I’m so tired,stressed, and strained. As for dad, he’s probably tired of it all .. not knowing what’s going on with his body.
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I took thought oxygen levels. The heart is no longer pumping oxygen thru his body. What is his Pause Ox? His Hemoglobin level? All these things effect oxygen doing its job. If his brain is not getting enough, then he will have Dementia like symptoms. You need to talk to the Hospice Nurse and get answers. That is what she is there for.
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Reply to JoAnn29
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Sorry about your situation. When my dad would get forgetful and loopy, his oxygen level was always low. If he isn't on oxygen, maybe you should look into it. We bought one of the finger monitors and checked every time he started to go south. I hope you get to the bottom of this soon. Especially, if he is doing well in every other aspect. Best wishes to you and your family.
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Reply to Playadelcarmen2
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Nikki; does the Hospice nurse think that this is delerium?

Have you considered taking dad off hospice temporarily, getting him to the ER and finding out what is going on? Not a hard thing to do.
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Reply to BarbBrooklyn
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Nikki; what is his Oxygen saturation level?
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Reply to BarbBrooklyn
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I am no expert on UTI’s so I can’t address it. I have never even experienced one myself.

I just want to say that I am sorry that you are struggling with this situation.

Best wishes to you and your father. This is a difficult and challenging issue to deal with.

I hope your dad will find relief soon and that you will find peace. Take care.
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Reply to NeedHelpWithMom
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Three days of cipro will knock out any UTI on earth in all likelihood. It is a drug now frowned upon due to RARE side effects it has; I myself dread the day it goes off the market as it was the only one that ever worked for my UTIs in the past when I got them (none for a decade after going on D-Mannose).
I don't quite get the thing about not testing urine? Hospice doesn't do treatments and testing aimed at "cure" of patient's diagnosis, but it does treat things that cause pain. Comfort is the goal. A mad person with a raging infection doesn't lend toward comfort. That is something I have never heard from a hospice and I would get that clear with doctor and with hospice.
Your questions of what to do in future are best addressed with and through hospice. Let them guide you. And good luck.
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Reply to AlvaDeer
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My husband who was suspected of having an UTI several times while under Hospice care in our home. They always took a urine sample to have analyzed to be sure, even though they usually started him on an antibiotic right away just to be safe. I would ask them again to take a sample and if they say no, ask them why, when you know other Hospice agencies do test the urine and it's all covered under Medicare.
And remember too that most antibiotics are taken for 7-10 days, so it might just be too early to see if it's helping. Best wishes.
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Reply to funkygrandma59
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Just a heads-up that Cipro is not a recommended antibiotic for the elderly as it can have bad side effects (my own mom had swelling in both her lower legs from it and it took a long time for it to go away). Others will post suggestions, but I come from a family of immigrants and understand the challenges of caring for our seniors with limited or no English language skills. If he speaks a common language, like Spanish, you may need to (and be easily able to) hire a bi-lingual caregiver to provide relief as your family tends to him.
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Nikki850 Oct 21, 2020
I see little swelling too. Is it just from the antibiotics? Should I worried about it? Does the swelling eventually go away for your mom? Sorry so much questions.
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"againx100" - OP has two other posts on October 8th and October 17
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Reply to NobodyGetsIt
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Pretty sure there are "dip sticks" you can buy over the counter to check urine. Might want to try that.
The only thing that you can not do on Hospice is seek treatment for the condition that made him eligible for Hospice. To checking and treating a UTI or other infection can be done. And some infections can be pretty resistant and it might take more than 1 round to knock it out
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Reply to Grandma1954
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How old is he? Why is he on hospice? Assuming that he has a terminal condition, maybe the confusion, etc. are just part of the process? It was a good call to consider/treat for UTI but I think hospice is more about keeping someone comfortable as they let nature take it's course. It is sad to see our parents decline and leave us but it is pretty much inevitable.

(P.S. You'll get better answers if you give more info. Your profile on "father" is contradictory to this post as to where he lives. Profile says he lives with you.)
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Reply to againx100
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Nikki850 Oct 21, 2020
He has end stage chf. He’s 85. We know that the tiredness and shortness of breath is part of his heart failure. It’s jusr that out of the blue he starts talking nonsense and being a bit forgetful. We started on 0.25 mg of morphine (which helps his breathing for about 2 days) so it’s not like he’s doped up on it. He’s not declining yet. It’s just something is wrong causing him to be off, he’s not declining or refusing anything so how can I let nature take it’s course. He’s not transitioning or anything yet so I can’t just let him go crazy and not do anything. At times he even said he thinks he’s losing his mind. As for where he lives. 3 years ago he was admitted to hospice with same diagnosis and lived with me. After over a year he gotten better and they discharged him. He went back to live with brother at his old home. Now he’s back in hospice and living at my brother. I go down there and spend two days taking care of medicine and talking to nurse (as none of my siblings are being helpful.. it’s all down to me). Dad is not yet transitioning or declining so I need to find out what’s causing his mental changes.
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