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CissyR Posted January 2023

Rough time, but getting through it.

This isn't really a question, I just want to vent about a rough time I've been going through. Mom, 86, has dementia and I've been living with her and caring for her for over 5 years. Just before Christmas, she got Covid. First time she's ever had it and I believe that's due to how very careful I've been. Always masking up, staying home, getting her and myself and rest of the family vaccinated. But her husband (who is mostly absent and not as careful) brought it home, and first she got it, then I did.


It's been so very hard being sick and still having to care for her. I sent my partner to stay with his brother because he for some reason didn't get sick and I wanted to protect him. So it was just me and mom in the house. I felt horrible and was sick for 2 weeks: still am in fact. Mom recovered more quickly for some reason, but then came down with a UTI. Once she gets a UTI she is too weak to walk and very out of it, almost like a zombie.


So she's bedridden, and I'm back to changing diapers which is so hard because she fights me. And poops a lot. Also the poor thing has been vomiting occasionally, I think due to coughing but I'm not sure. I feel completely drained and have very little energy left. Every day has been a struggle.


Oh did I mention I also work full time from home, and never got a break from that of course, though my job is not highly stressful. I usually have a good balance with work and caregiving though. It's a situation that works for me and I'm able to do what's needed. But being sick just pushed me over the edge into utter exhaustion and stress.


But! Things are looking up: her doctor prescribed an antibiotic which seemed to help, and the home healthcare service we were just about to be discharged from reinstated us to receive PT, OT and a home health aide as well as nurse visits. The goal is to get Mom back on her feet so she can make it to the bathroom and sit up in her chair. This is something we had just finished a course of: it seems every time she gets a little bit of strength back, she gets another UTI and is bedridden for days and the cycle starts again.


I think part of the reason she got the UTI this time, was because I was sick and unable to push the cranberry and fluids as well as I had been doing. I feel bad about this, but I did the best I could.


I'm looking forward to getting my energy back. Covid test was negative, and my partner is home and Mom is going to get the care she needs. I'll be back to normal soon! Thanks for listening.

Fawnby Jan 2023
Cissy, I'm sorry you've all had to go through this. What a nightmare! I hope you recover soon.

Has mom's doctor mentioned that the UTI is a result of her resistance being lowered due to having Covid? I'm asking because I try to piece together information about how Covid affects us once we get it. I've known so many who haven't recovered completely or have had follow-on issues (like your mother's UTI). There are a few with brain fog, but in none of those cases has anyone mentioned that the fog might have occurred due to lowered immunity. A friend who had Covid came down with another respiratory thing not long after recovering, and she thinks she got it due to weaker immunity now.

My husband and I are as careful as you have been, and we haven't had Covid. Our doctors' advice has been and still is to take serious precautions. Their premise is that it's better not to get sick in the first place because we might not escape unscathed. So even though the populace is supposed to pretend that the Covid pandemic is over, it isn't for some. My concern is that if I get sick, my LO's care will suffer. That could be disastrous for both of us.

IMO, all caregivers should be proactive in avoiding Covid (and other illnesses, of course). I saw a woman with a T-shirt that said "Don't Cough On Me." My sentiments exactly.

AliBoBali Jan 2023
Cissy, I read that about d-mannose, about the loose BM. I never experienced that myself.

My opinion is that d-mannose is far more help than harm when taken after a UTI to prevent quick reinfection. It helps flush out any remaining bacteria and clear things up completely. I won't take it as a preventative again, but I will take it if I get a UTI. Those who are prone to frequent UTIs report it as a godsend.

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CissyR Jan 2023
I'm sorry you had Covid too, it's so bad being sick when you have other things to do. I had the worst sore throat too, it was awful!

Mom was fully vaxxed, in fact she had gotten the 4th booster in rehab, but I only had 3 shots. I think this is why I was so much sicker. I plan on getting that fourth booster asap.

CissyR Jan 2023
Thanks for the links! I believe my mom is already designated as homebound. Through her doctor we got set up with a home health service, and everything has been covered by Medicare. It seems that as long as her doctor orders it, it is covered. We get nurse once a week, PT twice per week, OT twice per week and a home health aide for bathing and such once or twice per week. This goes on for 6 weeks or so and they taper back the services. But if something happens (and it always does) they send a nurse to reevaluate and we get to start the services again.

About D-Mannose. I had read about it last summer when Mom had her hospital stay for UTI. I asked her doctor and any nurses I talked to about it, and none of them had heard of it. But it sounded good to me so while Mom was in rehab I started giving it to her. I confess I didn't tell the nurses. In the next day or two, Mom started having a lot of big bowel movements and there were perplexed complaints from the nurses who had to change her diaper. I had read that D-Mannose could cause intestinal upset, so I stopped giving it to her.

I tried it again (in gummy form, Mom loves gummies) on my watch, and sure enough Mom started having lots of big BMs. So that was it for me, for D-Mannose. But I did start really pushing the cranberry juice, and I also got some plain cranberry supplements in gummy form. That together with more liquids in general seemed to help the UTI situation. But it is hard to get her to drink!

AliBoBali Jan 2023
Just a note about d-mannose: I started taking it a year ago when I had very unusual back-to-back UTIs. I took it until a few weeks ago when I went to the hospital, and they found I had very low sodium. The kidney doc asked me about supplements I was taking, and he wasn't familiar with d-mannose; he said he would look it up, then came back and said for me to stop taking it.

I think he overreacted because he wasn't sure what was causing my low sodium. There's no association (that I have read) between d-mannose and any side effect or health issue, but "high doses may cause kidney problems."

(I believe I had low sodium because I hadn't been feeling well and was drinking a lot of extra water to help with that. I had several bottles just while waiting in ER, and that had been a pattern for me during some rough months towards the end of last year, where I was drinking water constantly believing it could only help.)

Just something to be aware of when taking this supplement. I think it works great and is harmless. I took d-mannose as a preventative measure to prevent bacteria from accumulating in the plumbing. Another good option for UTI is the AZO Urinary Tract Defense (methenamine) -- an OTC antibiotic that can help treat at home. It's great to have tools to manage UTIs at home. I wish I'd known about these options during my caregiving years.

97yroldmom Jan 2023
I have never had a reason to try this, thankfully, but check out D-Mannose.
Many believe it helps and here is a link where you can read about how it compares to antibiotics for UTI infections.

https://www.healthline.com/health/d-mannose-for-uti

Also, read about home health for the home bound. Your mom may not qualify when she is better from the UTI but educate yourself on this Medicare insurance benefit and call on them when she does qualify. You have to allow them to do intermittent skilled nursing tasks like filling her pill box. Remember that as your mom gets older, so are you. Take good care of yourself. I am glad you and she are feeling better.

Here is a link regarding home bound. If your mom needs you or another adult to take her out, she probably qualifies.

https://www.medicareinteractive.org/get-answers/medicare-covered-services/home-health-services/the-homebound-requirement

AliBoBali Jan 2023
"Rough time," "utter exhaustion and stress."

Those are the words I use, too, when I'm tapped to the point of non-functioning. I'm sorry you're going through such a difficult time. I'm glad you're partner is home. Can you stay in bed for a day or two?

When you're used to being always on the clock with caregiving, it's difficult to stop that pattern of always being on alert and doing something, but a day or two in bed would help reset that stress meter and get you back to health quicker. Self-care is as important as care for your mom.

I'm glad you're through the worst of it. (((((hugs))))) and healing.

AlvaDeer Jan 2023
So glad that all are feeling a bit better. You have a very full plate. I sure wish you the very best in healing.

Midkid58 Jan 2023
Wow--when it rains, it pours!

Sounds like you really have all your ducks in a row, I hope you know how unusual that it--at least my info from reading on this site.

I assume your mom was vaxxed? It is pretty amazing that she did not get COVID sooner--that's a testament to your good hygeine, and CG!

I also had COVID for 2 long weeks. I really 'lost' about 5 days, completely. We were in the midst of renovating our new home and I was too sick to come upstairs and talk to the contractors, so I gave them free reign. Luckily, they were great guys and actually came down to check on me and brought me cold drinks. I couldn't even swallow ice chips!

Take care of yourself--what a great attitide you have!! we can all take a page from your book!

Daughterof1930 Jan 2023
So sorry it’s been such a rough time for you and your mom. Hope you’re getting enough rest and time for yourself. Wishing you healing and peace

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