Need to go to the bathroom, but can't walk, problem..??

jrkubr

Hello Everyone, 

Thank you ALL for this for, I read it often.

My mother is 92, she has 24/7 care with caring Aides in her home. I take care of all her non-daily needs, and visit her once a week. She has, I'd say, moderate dementia or so. She is very very articulate and verbal in the present, and can have some wonderful conversations with me, but can't remember much of anything that happened a few minute previously. 

She also has a broken and displaced hip, and has been unable to stand for close to a year. She goes from her bed to a chair. She only has pain when the leg/hip is moved, and is pretty comfortable (more or less) when sitting or lying down, still. 

BUT she feels the need, pretty much constantly to "go to the bathroom" and asks, begs, then cries, constantly. She has been totally incontinent for at least 2 years. She can't remember that her hip is broken, or that holding her up to stand or moving the bad leg at all, causes screaming-intense pain. She thinks she can walk.  And every time (when I'm there) I tell her otherwise, she's shocked, falls into despair, cries, can't bear the news of it, says "it hurts" she has to go to the bathroom, she can't go in the diaper, etc..  Eventually (I assume once she unknowingly "goes in her diaper") the issue resolves and she is a lovely, engaged, chatty person. I know she has a "distended bladder" so perhaps the need is real. I also know it disappears at times, as suddenly as it appears. A distraction can sometimes end the terrible need/pain/crying etc... But it can go on "i have to go" followed by crying, for hours..

She is homebound, clearly. It is basically impossible to get her a doctor. In the past when she was still going in a wheelchair (impossible now, it's excruciating for her), she would screech  "get me out of here!!!" "they're killing me" and so on. So it isn't easy. I talk to her doctors regularly. I cannot find one in the area to come to her home. She is a DNR. She has a multitude of other health problems: COPD, diabetes, CHF, stage 4 kidney disease, etc. She has been on, and kicked off, home hospice (she talks, she eats, she's kicked off). She can move her arms, and that's about it. 

I am looking for a way, if possible, to deal with the intense need to get up to go to the bathroom. It can go on for hours. It can start at 3:30AM, etc.. Might there be a medication to calm those urges? Without side effects? I know there is the risk of a UTI, but she has been like this for months and months. And how would anyone even get a urine sample? I just want her to be comfortable and suffer less. When she's NOT yelling "take me to the bathroom, I can walk, I walked yesterday, take me!!!" she is content, happy to be alive, enjoys her meals, her view out the window, looking at her photos, and etc. 

Any thoughts re: how to deal with this? I will talk to her doctor, of course, but curious about personal experience. 

Thank you!

towhee

I remember this. I have nightmares about this. My LOs hip healed, honestly in spite of the rehab centers's care, and she was eventually able to do one person transfers to the toilet. But they stuck her in briefs upon admission to rehab and it was awful. She begged to be allowed to go to the toilet, and begged. And then it got worse. They thought being constipated might be part of the problem (that can cause an urge to pee) and they put her on a laxative. The laxative doubled her distress, but no one picked up on the cause until I asked the palliative care nurse if it could possibly be contributing and she said yes. She lowered the dose of laxative, reduced the constipating contributing medications, then stopped the laxative. It was a great deal better, and then she talked to the nursing staff and got them to put my LO on a bedpan. They were having to turn her to change her briefs anyway and it wasn't much more movement. My LO felt comfortable with the bedpan and she released the urine. The nurse also said that your body wants to pee more when you are lying down. Two months of you know what and resolved with such a simple fix. 

If hospice won't come, do you have palliative care in your region? Your LO sounds like they would be a good fit with palliative care.

Hope things get better.

jrkubr

Thank you so much for your response, towhee. And I'm so sorry you had to go through that. 

Yes, when I took my mother to the hospital, close to a year ago, to get her hip X-rayed, etc. she was tended to by a Palliative care team.

 Unfortunately, they turned her into a zombie. Yes, they took care of her pain, but she was totally out of it. Her kidney disease limits the options, and low dose fentanyl patch made her non verbal. Her pain is minimal except when she's moved chair-bed, bed-chair, which her Aides do quickly. And when she feels the pain/urge "to go to the bathroom." Which is, now, OFTEN. 

Her hip will never heal. Her Aides manage her bowel functions when she's lying down.

I'm reluctant to give her all those pain meds again.  She might as well not be alive, if she's totally out of it. She seems content/happy when she doesn't "need to go" and likes to talk, etc.. It's a trade off. And, so far, I imagine she'd prefer to be awake/alert. She always told me she didn't like being drugged up when she was younger/healthy.