Ron went for a respite on October 3rd and II picked him up on the 13th, while I went away with old friends. On the 10th the Hospice nurse called me to say he had a temp and they suspected a UTI. He started an antibiotic on the 11th. By the time I picked him on the 13th he could not stand enough to transfer him from one chair to another. They physically lifted him into my car.
DD was here when I got home and we lifted him out of the car to his transport chair. By the time we got him to bed he couldn't even sit up, he was slumped forward in his chair. The hospice aide bathed him in bed on Monday the 14th and he hasn't been up since. Tuesday they brought a hospital bed with an air mattress that the cells go up and down. ( I didn't know that was what some here were referring to. )
He was on the antibiotic for 10 days and did seem better yesterday. He actually spoke a few words and was awake most of the day watching old Westerns on DVD's. Now today he is right back to totally unresponsive except when I am feeding him. He will eat almost anything I put in his mouth.
Tonight I am having a pity party. I just feel like I am overwhelmed with it all. I know he is in end stages and on hospice but I just didn't expect such a dramatic downturn. I thought he might perk up once the infection was gone and he was home for a week.
if there is a dramatic decline I would ask the dr who treated him while in respite for a complete list of meds he was given. its possible they added something strong if he was agitated a bit. those potent meds even in small doses can make them decline dramatically too. and a uti can deplete them severely esp if he didn't get enough fluids while there. its always a worry that they don't get adequate attention while in respite when needed, ie enough fluids or someone to take the time to get them fed well. I would also ask what antibiotics he took and if they ran a culture to be sure they got the right AB for the bacteria specific type he had. if not it may not completely be alleviated and he can continue to show symptoms of uti. that's a steep decline to come home to even with a uti. I would consult the med staff who attended him and see what all they did during that time. sorry hes not doing well. I know its a worry when this happens.
Thanks Divvi. I thought they were going to culture but something the NH nurse said made me think they didn't. The hospice Dr put him on Levofloxacin 250 mg for 5 days. He was home by then and the day of his last dose the hospice aide who comes every morning didn't like the color of the urine so they gave him another 5 days. Years ago his urologist always gave him cipro. Same or related drug? They did not keep him in bed but had to put him in a recliner so he would not fall forward.
The suggestion to find out what meds were given it good and I hope something can help your DH feel better. I can relate to your concerns. When my uncle was in a NH, where the care was very good, on a Sunday, he had been up, in the community room and otherwise doing well. Then in the afternoon he was feeling unwell, and had started to spike a fever. He was given Tylenol. I visited with my uncle who was not feeling at all well and the nurse said she would call if there were any changes. I drove home ( 3 hours) and was going to return the next day to be with him and my aunt. I got home at 9:15 and at 9:30 I got a call from the nurse to tell me my favorite uncle in all the world had just passed away. I don't say this to scare you but I do think that when our LOs are in the later stages of this miserable disease, anything can happen and it can be sudden. I hope you have someone near you that you can call on for help any time you need it. Arms around.
Mary, please get all the info you can about his treatment while in respite. divvi has given you great advice. I would also look up the side effects of Levofloxacin...my husband has had VERY SEVERE reactions to the antibiotics, particularly when they've been given by IV. They gave him Avelox and by the time they finished the IV he was confused, could no longer walk without being in a wheelchair (he walked into the ER without a problem) and had 3 seizures. When they gave him Rociphen, he had a seizure. It could very well be a reaction to the antibiotic.
Mary I am by no means a dr and what I always say here is from my own experiences. levofloxacin is Levaquin a highly potent AB with a broad spectrum which means it can kill a wide variety of bacterias when the specific one isn't known. my DH took it many many times. but its potent for sure. cipro is specific for urinary tract as I understand as we take that too at times. ceftin as well as doxycycline too. so I am famililar with many of them. look up side effects of levaquin and see. 250mg isn't a high dose for that one, as it comes 500mg too. but if it were me I would ask your hospice aide to place a cath and get a clean new sample and have a culture done just to be sure since he already said the first 5 days didn't work well. it could mean its not the right AB. and a shame to use such a potent one if its not working to clear it up. but that's just me. the side effects of all these meds need to be observed esp with our AD spouses as they have little tolerance and their systems are weak and immunity is low. something isn't right if hes still in a spiral. ask your hospice DR to come address him instead of the nurse or aide. that's what you are paying for. hope he improves. but yes we know spirals can come suddenly with the disease too. and for the record an ER doc put DH for uti on levaquin and sent home. after 4days he called and said that AB wasn't the right one as it took 4 days for bacteria to culture and changed the med to cipro! so yes it happens. divvi
Ron still has not been out of bed in the 15 days he has been home. The caretaker who came this morning was surprised he looked so much worse from when she was here a week ago.
He still eats everything I put in his mouth but he hardly opens his eyes or says a word. He has been coughing and aspirating liquids when he drinks ( through a straw) so the hospice nurse brought some thickener to put in water and juice. Ensure is thick enough that it doesn't cause as much of a problem. The thickener seemed to work the twice I used this afternoon in water.