Hell week...a cold hard reality check

gampiano

Hello fellow travelers,

My DH and I have been trudging long in stage 6. Ive been adapting, reinventing, reading old and new posts for guidance. But I truly wasn't prepared for the drastic turn of events that took place last week.

DH had another UTI, and the culture showed a resistant form of strep. He was very weak, and out of it, and then... the antibiotics kicked in and he turned into a Parkinson's patient literally in one day. Tremors, spatial issues, vision changes, hallucinations, and , worst of all, he fell 3 times. I had to have EMTs come to pick him up.

WE had just transitioned to first floor living, thankfully, but he was awake and agitated for 48 hours straight, with me monitoring his every move. This was a glimpse into the future. I can handle the personal care , manage the household, continue to work from home, but i can't do it on NO SLEEP. This is what kills caregivers or at least makes them sick.

DR. wants me to put him on benadryl, 12.5 mg tid, for a week. If that is effective, then he will prescribe something based on the results. Ive also reached out to Palliative Care services, and 2 social workers are coming over on friday to do intake and discuss the program. Hired a CNA to come 3 afternoons a week and keep eyes on him while i teach. Now i'm thinking of renting out the master BR +bath upstairs to get more money for caregivers. Its been on my mind for awhile, but now that DH will no longer be allowed upstairs, its becoming feasible.

Anyway, this is scary, sad, and ....well, you all know the rest.

Maureen

upstateAnn

Hugs and warm thoughts.

gampiano

thank you, Ann

Ed1937

Maureen, I'm so sorry. "Tremors, spatial issues, vision changes, hallucinations, and , worst of all, he fell 3 times." All of these things could be brought on by the UTI, and not necessarily progression. Hopefully that's the case, and they can get rid of the infection. I'll say a prayer for you tonight.

Iris L.

Please review Benadryl side effects in older adults. There is increased risk of falls due to drowsiness and decreased alertness. There might be a paradoxical effect resulting in increased agitation. With a UTI, there should be improvement within 48 hours. If not, a culture and sensitivity should be done to determine the correct antibiotic. There is a lot of antibiotic resistance.

Iris

Joe C.

Maureen, I second Iris suggestion about reviewing Benadryl’s use in a PWD. I have always been advised not to use these types of sleep aid as the might aggravate the symptoms of AD. Attached is one such article on medication to be avoided, Benadryl is discussed in the over the counter paragraph.

https://mind.uci.edu/medications-and-patients-with-alzheimers-disease-what-to-avoid/

JeriLynn66

I’m so sorry… sending hugs and prayers ❤️

Denise1847

Maureen, I cannot imagine what you are going through. You are a rock star that you have endured through this "hell week" and are still going like a super planner. I am so glad you are getting help and I pray that things get better.

M1

Just seconding/thirding what Iris and Jo have already said about Benadryl. Also, if the antibiotic is a quinolone like Cipro, levaquin, or Ofloxacin, those can also have central nervous system effects. So sorry.

gampiano

Thank you all, for the valuable input. Yes, the antibiotic is levaquin, and thankfully, we are finished with it. Went for labs Tuesday to see if the infection has cleared. waiting for results.

Symptoms have abated, thankfully. IDK why the VA doctor, who has been great so far, would have suggested Benadryl to try for a week. Ill look up those side effects.

Again, thank you all.

Maureen

Marta

It infuriates me that prescribers continue to use quinolone antibiotics in PWD. These meds can create central nervous system havoc even in non-PWD. Caregivers: remember these two: Levaquin (levofloxacin) and Cipro (ciprofloxacin) - do not allow your loved one to be given these meds.

Ditto: the use of Benadryl!

housefinch

I’m a pediatrician, but even I bit my tongue and rolled my eyes when I saw this. Inside I thought, “Uh oh, a fluoroquinolone,” and “Benadryl? Yikes!” So sorry!!!! Hoping everything improves for you from here onwards.

SDianeL

So sorry you are going through this. My DH is stage 5 going into Late Stage 5 and also goes to the VA. If your VA doctor that suggested the Benadryl is a Primary Care Doctor, please get a referral to a Geriatrics PCP & a Geri Psychiatrist who is the proper professional to manage dementia medications. We just met with a Geri Psych doctor and she was awesome. She increased his Risperidone from 1/2 tab at night to 1/2 tab AM & PM and it's helped some. No to the Benadryl. Benadryl has been linked to memory loss. My daughter sent me a link for that. Also as other have said the antibiotic is toxic to the nervous system. I took it once and I felt like I glowed in the dark!! Every nerve in my body was firing. Can't can't be good for someone with Dementia or ALZ. https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667

gampiano

Thank you all. S Diane L, I have learned more about VA Benefits and navigating the system through your posting. I will follow up on your suggestion,

Gratefully,

Maureen

Anna2022

https://alzconnected.org/discussion/comment/182523#Comment_182523

Thank you for this information!

ImMaggieMae

My DH is going through a nasty UTI right now. The doc first prescribed Cefdiner and then after the culture came back, told me to discontinue that and start giving him Amox/clav instead. He’s been on the Amox for 3 days and judging from his actions, it doesn’t seem to be helping much. He’s had bowel incontinence the past few days and diarrhea. Any of you know anything about these two drugs? Some of the symptoms sound like what gampiano is describing except that he sleeps well. He’s had UTI’s in the past that usually started clearing in a couple days with antibiotics like Cipro.