So Grandma was getting up and going to the bathroom just fine until about two weeks into physical therapy. This was also around the time that she developed a UTI. It was treated, but a culture was never done so I don't know if it was cleared up. It was difficult enough trying to figure out what was even going on with her. Are there any reasons anyone can think of why Grandma is just sitting in her recliner peeing in her pullup diaper instead of just getting up and going to the bathroom? Tonight, she called me into the bathroom at bedtime to help pull up her diaper and pants. I noticed right away that her diaper was very wet. I asked her if it needed changing and she said it was only a little wet. It was clearly droopy indicating there was at least 12 oz. of pee in there, maybe more. I kept looking at it and she was getting huffy stating that it didn't need changing. I was already irritated and tired so I let it go, although I did tell her she just doesn't want to change it. So now this means she'll wet the bed because the diaper will leak overnight. Thankfully I do use two different layers of pee pads. I feel like I need to start being more strict with her. I feel like giving her the following choice: Either she stops peeing in the diaper and gets up and goes to the bathroom when she needs to or instead of making her get up every two hours to go (as recommended by urologist), I'll make her get up every hour (physical therapist recommended that anyway). What do you all think? I'm just tired of this. I feel like she thinks I'm her slave. I'm tired of this crap! Either she needs to stop this crap or she can go back to assisted living. I'm not even getting paid for this, although that might help. I had no idea she would go downhill so fast after moving in with me. I suspect this is all dementia related, I just don't understand how the peeing is connected to the physical therapy and dementia.

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A few thoughts:

Don’t call it a diaper to her. I just call them underpants. The NH call them briefs or pull-ups. Diapers are very embarrassing or demeaning term to them, like calling them a baby.

Sitting in wet briefs and improper cleaning after a bowel movement are the causes of UTIs. She will have recurrent ones if this isn’t addressed. 

Don’t ask her if it needs to be changed. Tell her, then change it. The elderly can have reduced feeling of “having gone”. So maybe she doesn’t realize she’s peeing.

Use therapeutic fibs if needed. “The doctor says we need to change your underpants every 2 hours, just in case. You don’t want another UTI.”

Her generation may have been very thrifty. She may think they cost too much and is trying to save money. Another fib to throw in occasionally. “ I got such a good deal on these pull-ups! They’re as cheap as toilet paper! Now we can change them even if they’re just a little wet!” A big fib I know since they’re expensive, but you want to avoid more UTIs at all costs!

The pull-up kind may be just a pain the the rear for her, entailing complete removal of shoes and slacks while sitting on the toilet. I found this was Moms big challenge when she was on her own. The ones with tabs can be changed while sitting on the toilet without removal of shoes or slacks. Much easier for everyone. 

Why was no culture run? There are many types of bacteria that cause UTIs and they are treated with different antibiotics. Some antibiotics can treat more than one type, but unless you get a culture done, it’s just guesswork. When Mom had a UTI she was treated for the 1st culture, but symptoms didn’t go away, and a another test found a different bacteria “lurking” in the background which needed a different antibiotic.

This probably doesn't have anything to do with PT...more so the dementia. (You don’t say why she was in therapy...a fall perhaps?) Why is she living with you now and not in AL? Is this just temporary? This is just the beginning of the “crap” you’ll be dealing with. Literally. Are you ready for this? It’s not going to get easier.
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I just wanted to add...
My mom was in AL and getting PT after a stroke; she'd been through Acute and Subacute rehab.

The PT who was working with her noticed that she wasn't bearing weight on one of her legs. He called for a portable XRAY. Lo and behold, my mom had a broken hip!

Folks with dementia are notoriously bad at reporting pain, or localizing it. The good news is that mom's hip with repaired, she went to rehab and a NH and lived for another 4 years there.
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If the PT recommends an hourly trip to the bathroom - maintaining transferring abilities, as well as stirring the circulation, both good things - then that's the thing to do. Or attempt, anyway.

Before you get forceful though, you (I agree with BB) do need to make sure there isn't a cause of pain that you don't know about. Is the PT still seeing her regularly? - they have good techniques for checking joints to see if any particular movement is uncomfortable.

But. If your grandmother is sitting in a wet diaper for any length of time you don't need to worry about whether that original uti was cleared up. Because it's a pound to a penny she'll have a brand new one anyway.

I also have to second BB's question: are you confident you were given all the information before you discharged her from the facility?
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Her dementia is getting worse. She needs supervised toileting but do expect that diapers will be wet on occasion. With scheduled times and supervision the situation and cooperation may be improved , but alas, time marches on
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A guess here, but PT has made grandma as sore as it makes me? It hurts to move. Then you don’t know if the UTI is completely cleared.

Perhaps a pain pill would help? She might feel like tackling the bathroom. Yeah maybe another UTI check. Good luck.
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I have bad dreams that my dad breaks my mom out of AL! It’s really mine and my daughter’s and dad’s worse nightmare! We can barely cope with an outing.

Tell us how your grandma ended up at your house or are we misunderstanding the situation?
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Grandma was taken out of assisted living a few months after Grandpa died. He needed to be there due to health issues, but Grandma didn't. She had been there a year at the time it was decided to take her out. She hated it there anyway. I started noticing the whimpering noises within the first few weeks after she came to live with me two years ago. It was mostly at bedtime, but would stop shortly after she got in bed. After a few months, she started making them during the day. If someone walked in the room she would quickly stop and act like she was talking about something else. In retrospect, I often wonder if she had managed to hide the noises and got to a point where she couldn't anymore (showtiming?). I don't know if she displayed these behaviors with Grandpa or if it started after he died. I don't think he could've tolerated her making noises like that though.

She started physical therapy because the doctor thought it would be good. She had been having problems with mobility due to blood clots in her legs and had to go back on blood thinners. Since she relies on a walker to get around, I had expressed concern that if she couldn't walk, she would have to go to assisted living or a nursing home. I refuse to have a home health aide come to my house to help take care of her. It's too stressful and too disruptive to me and my pets (Grandma is already stressing them out - they sense things). I have to draw the line somewhere.

She's doing well in therapy though. She always shows improvement on her evaluations. But she doesn't seem to have endurance. I still cannot take her to a doctor's office without taking her in a wheelchair. She has enough trouble getting around at home. I don't know if she legitimately has trouble or she just thinks she does. I know people who like to "milk" their injuries or people who are overdramatic weenies. I remember my 12 y/o cousin getting his finger jammed playing basketball in gym class. He had to come home because he couldn't do anything in school. Then the rest of the day, he just went on and on about it. He acted like he would be disabled for weeks. I've had my finger jammed many times as a child. I sucked it up and moved on, it only hurt for a short time, no big deal. Grandma used to have a super high tolerance for pain just a few years ago, but not anymore. It seems like she has no self confidence and an irrational fear of falling. She's afraid to bend over on the toilet because she thinks she'll fall off, I'm not even sure that's possible.

I'm not sure what the doctor can give for pain. She can't have Advil or Aleve while taking blood thinners, especially Xarelto. Tylenol is worthless.

When I take her to the doctors, she says everything is ok. She makes me look like someone with Munchausen's By Proxy.

So what type of doctor do I take her to for a dementia screening or diagnosis? And do I tell her that's what she's going in for, or try to hide it from her? I would imagine a dementia diagnosis would be scary and depressing for someone. Although, I wonder if she already knows she has it.
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Good lord, woman. Your total lack of empathy for your frail old grandma has me wondering why on earth you signed up to be her caregiver!

Why do you think there is nothing that can be given for pain. Have you asked?

Do you know what Munchuasen's by proxy is? Look it up.

You clearly think gma is faking her pain. You can't be bothered to having folks in to care for gma, because your animals get stressed. Ye gods!

PLEASE send gma back to AL.
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The elderly can definitely fall off the toilet. Moms roommate just did it yesterday. Took 3 aides to get her up trying not to hurt her.
Her fear of falling may not be so irrational.
Do you speak up at her doctors appointments? It sounds like she may be a candidate for assisted living or long term care at this point? What does he think? Endurance fades quickly in the elderly. She may be physically and emotionally past the point of “sucking it up” like we could when we were younger.
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Grandma could be in pain...emotional and physical pain. She stayed with your grandpa until he died in AL? Dementia I swear, is contagious for some caregivers too. I spent five short days with my mom and MY brain was scrambled. Your grandma stayed with your grandpa for an extended period of time! She might be in beginning dementia. Then she’s sore from PT. She’s not the same lady as before she went to AL to care for her husband.

Whimpering can be muffled crying. She is ‘sucking up’ about her grief and her miserable life. Poor lady.

She probably would be happier at AL. Maybe a different one from the previous one, where her husband died.
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