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Last Wednesday, my mom ate lunch at her memory care home and went to take a nap. They went to check on her and couldn't wake her up, despite all the typical tactics to bring someone around. They sent her to the ER. It was only after arrivingby ambulance that she became aware again. Her BP was in range, pulse was steady, O2 good. Breath normal.



They ran tests (including an MRI a day and a half after presenting at the ER) and ruled out stroke, but they admitted her. Thursday she got disoriented and peed in the corner of her room. Next thing I knew, they were keeping her another night because she was retaining urine. I should mention that I myself am currently on bed rest, trying to recover from a mild bout of pancreatitis without hospitalization, so I can't be there and I'm relying on nurses to convey information. As her medical POA, I asked for a call from her doctor and finally got one after three days and only because I got pretty stinky about it. So the doc tells me they are holding her because she isn't discharging her bladder and she tells me this is common with dementia patients - essentially, the brain forgets to send the signal to her bladder. They finally gave her a catheter and she is going back home today, but to the SN unit at her place. I asked the doc about the original presenting complaint, and she just said they ruled out stroke.



So - IS this common? I'm frustrated beyond words at not being able to be there and ask questions so I'm trying to wade through my frustration to understand better what's going on. I've heard about incontinence but not retention. Can't imagine how/if this might be tied to her sleeping beauty event. Frustrated that I talked to every shift of nurses and told every one of them that she had ALZ and still, the next shift talked to me as though her confusion is part of her acute problem. There is no way they can talk to her for five minutes and not hear the ALZ screaming through at them, yet I feel like they have probably treated her as a cognizant patient capable of decision-making.



Anyway - anyone with experience with urinary retention with their LO?

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I was thinking more about your mom and remembered a couple of things that happened to my elders while in care.
They both had to do with diabetic meds. I don’t see that your mom was diabetic but sometimes mistakes happen.
One was when my mom was in a rehab, the floor nurse seemed very rattled. I intercepted more than once her about to give, administer something for my mom that was intended for another patient. Once she was going to test my mom’s blood sugar and my mom was not diabetic.

Years later, my FIL, who was diabetic, was given diabetes drugs in an ALF after he had been off them for a couple of years. (Long story) His blood sugar went too low and I got a call that he was not responsive and had to be taken to the hospital (where he later died from complications of a Fall while in the hospital).
I’m not sure how much diff there is between “not responsive” and “couldn’t wake her up”. On the surface they seem the same. With all the confusion of rotating staff, etc. I would be asking if it is possible your mom could have been given the wrong meds? Just an out there thought but makes more sense to me than urine retention. I do know that NH have to report everything they do for a Medicaid patient in real time to the Medicaid oversight company. I don’t know if they have to report to anyone when it is a private pay patient in real time. But you might want to ask for a list of meds given preceding her long nap. You might have already done.

Another relative this past fall, had lunch and then went from the dining room to his room and lay down for a nap. When the aide went in to change him, she rolled him over from his side facing away from her. She thought he was asleep. He had passed.

So, that is just three family members of mine and very different circumstances. Not all events have an understood cause. There is much we don’t know. There is much the medical staff doesn’t know.

Here is a link that might be helpful where others have dealt with this.

https://forum.alzheimers.org.uk/threads/incredibly-deep-sleep-that-you-cant-be-woken-from-has-anyone-else-experienced-this.100255/

Often the hospital referral will get a patient in sooner. Worth a try to see the urologist. My dads urologist was always so helpful even when the issue wasn’t related to the bladder. I later took my mom to him and he helped a lot. Worth the trouble in my situation. Parents were three hours from their medical care.
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mgmbaker May 29, 2023
Being diabetic myself, I went immediately to meds too! However, Mom isn't diabetic - she takes some memory meds and synthroid. That isn't to say she didn't get something not intended for her. I wonder if they checked her sugar when she presented at the ER. That's a good question. The only real problem I know we've had at MC is that they trusted her to take her meds when they handed them to her, but she was palming them and then ditching them behind her bed. Once I found them and told them what she was doing, they started closely observing her taking them. Thanks for the article.
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In my experience as a nurse I have seldom seem retention in a woman without good reason. I agree absolutely with 97yroldmom that often a problem is developed where a neurogenic bladder doesn't allow complete emptying, but retention was rare. Common for men with prostate problems or medications.

Speaking of meds, it is time to evaluate them, because some can cause retention. I am certain the MD must have done this.

Wish I could be more helpful and I hope there was an evaluation by a urologist. Glad she is in the SNF portion as I don't think the indwelling catheter situation is well handled in regular memory care, and often leads to infection.

So sorry she's going through this.
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mgmbaker May 29, 2023
In general, I just didn't feel good about the hospital care she received, but I realize some significant part of my feelings is likely because I was unable to be there observing. And I guess that - with the exception of one nurse that seemed not to care - her nursing staff was excellent, especially to be dealing with a very difficult ALZ patient. I just think they should have been a little more proactive in getting the doc to call me instead of me having to go "over their heads" after waiting three days for a phone call. It just didn't seem right that they never resolved the sleeping issue or at least told me "no biggie in ALZ" and went straight into the urinary issue, which appeared to develop while she was there - even right after she lost control of her bladder in the hospital. The doc told me that the last they had checked, it appeared she was retaining 800ml of urine, which sounds like that's not even possible (but that's based on Google not my medical expertise..lol). I'm just relieved to get her out and I'm so glad the SNF is part of her MCF, so the director and medical staff there are familiar to me and I trust their care.I think I'm going to request a copy of her medical records from this visit and I'm going to push hard to get the urology consult done rather than waiting for them to call us. Alva, Do you have any tips on how to handle the next hospitalization? The likelihood I'll be out of commission is slim to none, but I don't feel like my experience advocating for my kids or my husband in the hospital nearly covers doing the same for my mom. I want to be a positive part of her care team, whether that means staying out of the way or speaking up.
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My mom didn’t have dementia but did have an issue with completely emptying her bladder. She was given a Med to relax her bladder. An estrogen creme and had a surgical procedure which seemed to help. I wonder if a urologist was consulted for your mom?
I wouldn’t think this had anything to do with her being unable to wake up. There is quiet a bit online about not being able to wake. That may never happen again, or it might become an ongoing part of her dementia. Many elderly are hard to wake if their nights and days are confused. The experience of being taken to the ER might have caused her dementia to advance. I hope you are able to sort it out and feel better soon yourself.
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mgmbaker May 29, 2023
They discharged her with a urology referral. I am not sure whether one was consulted while she was there. Thing is - we are very rural and often specialists are very difficult to get in with. We may be looking at an initial visit in two months.

I was unaware that that kind of deep sleep is normal for dementia - can you give me some key words to research on that? And with you saying that, I'm very surprised that her MC was concerned. She does indeed have her days and nights mixed up - she has "planned" insurrections with other residents in the middle of the night. I can only imagine staffing at night. It must get some kind of interesting on a MC unit.
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I have never heard of dementia causing this, usually it's incontinence and the inability to hold urine.
I'm also surprised you were asked so often if she had dementia, because in my experience people tend to assume anyone who is confused and over the age of 70 is demented and don't look for other causes.
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mgmbaker May 29, 2023
Yeah, that was surprising to me as well. In fact, we did her admission paperwork over the phone and I told that nurse 1) I am her medical POA and I have her advance directive and DNR I can fax or email if needed, 2) She has Alzheimer's and is unable to make decisions, and 3) she's a fall risk. Oh, and that I would be available by phone 24/7 while she was there. It seems that the only thing that really got passed along was that she was a fall risk - they assigned a sitter to stay in her room with her and she hated that and shrieked at that person constantly. (That's her normal state of mind - she hates anything someone else imposes on her).The only reason I sort of get it is that they were screening for UTIs and that, as we all know, can cause some temporary delirium, but since that was one consideration, the fact she had ALZ should have been significant to that rule out anyway (as her bloodwork later proved).
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