Incontinence before Dementia - forgetting pads

DLewis2024

My Mom was diagnosed with dementia 5 years ago. She was having kidney/bladder/incontinence issues before that. She recently started forgetting to put in a pad. Yesterday she stood and peed while we were having dinner with some friends. She knew she was doing it. She had forgot to put a pad in, but didn't realize it. She's also been either forgetting to put a clean pad in during the middle of the night or sleeping through going to the bathroom at night and wetting the bed. She wants to go to her urologist, but I don't think it's anything she can "solve", but Mom's adament it is. Any advice on what to have her wear at night and how to make sure she's always wearing something? Do I make an appointment with the Dr? BTW I've checked her for a UTI and she doesn't have one.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

To my ear, this sounds like a variation of the stage 5 progression towards urinary incontinence in a PWD who wasn't previously incontinent. There is a phase before actual episodes of incontinence in which a PWD forgets the steps and/or etiquette around toileting that signals a progression in impairment. Family members may find the PWD isn't wiping well, used TP may be left on the vanity or in the wastebasket and steps like handwashing or flushing may be skipped. Some may even urinate in inappropriate places like chairs, floors or hampers.

The standard advice here is that this behavior signals a need for human supervision with toileting. This is one option— you or another caregiver go into the bathroom with her to prompt the pad use/change and other steps. Given that you are headed towards complete incontinence, I would suggest disappearing her regular panties and replacing them with the prettiest Depends-like product and make the transition now. Some PWD transition easily, for others it might be rougher. It can be hard to predict.

If the trip to the urologist is not practical now, could you claim you reached out and tell her the doctor suggested these new panties until her next appointment. You could create a fiblet about being on a waiting list to be seen. Rinse and repeat.

HB

Emily 123

I agree with HB. The disease has removed the ability to recognize the need for more secure protection, and to maintain hygiene.
It helps to remove other options and replace them with incontinence briefs. You can tell her that the doctor was concerned that she might be having ‘leaking’ and recommended it as a way to help prevent UTI’s.

H1235

I agree with HB. I think it’s time to make the switch from pads to depends. I think I would make the undies disappear to help with confusion over which to wear. It might work to hand her her pajamas and an overnight depends in the evening to signal her that she needs to change it. It might get her into a routine. Saying something before bed like “why don’t you go ahead and use the bathroom while I turn out the lights”. It’s a suggestion to use the bathroom without flat out telling her “you have to use the bathroom before bed”. If that works I would even see if you could find a way to do something similar in the middle of the day. There are pads that can be put down on the bed to protect things and make cleanup easier. Something to look into. I doubt there is much the doctor is going to be able to do for her. If she has been struggling with bladder issues for a long time she is probably already on any medication that might help. You could try to just put it off as HB suggested. On the other hand if cost is not an issue, your willing and you think it will help her anxiety over the situation to hear from the doctor first hand, maybe it’s worth it to take her. I would make sure the doctor is aware of the dementia and the situation, probably before the appointment. Hope you find a solution that works.

DLewis2024

Thank you so much, you've all been so very helpful. I should have signed up for this a long time ago! This isn't harder than I imagined, but being patient and not knowing what to do is tough. I tend to be a bit of a drill sargent by nature (she just calls me bossy:) so I appreciate the ways to say things differently!

We do have the pads on the bed and have for a while. We'll make the switch over to the depends. She doesn't seem to mind them. I am going to try documenting with her the water/liquid intake and urinating (She likes to try to keep track of things) as a step before the Drs which was my sister's idea. She is on myrbetriq. If we go to urologist, her response is going to be to just up the myrbetriq, but that medication makes her dementia symptoms worse. I want to make sure it's getting worse before we go that route. If not, we could take her to primary care to check for a UTI which might satisfy Mom's desire to go to the Dr.

Thank you again!!

M1

I think you're right to be cautious about myrbetriq and all other stress/urge incontinence drugs in this setting. Frankly i would consider stopping them; this is incontinence from a central cause that the drugs are not going to help. the longer term answer is to put her in Depends and let her be incontinent. I know that's not what you want hear though.

harshedbuzz

I was poking around and found this—

Study adds to evidence linking anticholinergics, dementia (urologytimes.com)

Basically, Myrbetriq is not an anticholinergic drug, so the dementia risks are different. Did she ever take one any of that class of medications in the past? Have you observed sudden worsening of symptoms on Myrbetriq alone? Have you stopped the Myrbetriq to see if there was symptom improvement? Could she have vascular dementia which tends to progress in a series of plateaus and drops and be attributing a "new normal" to a coincidence?

If the Myrbetriq is a problem, would it harm her not to take it aside from the laundry complications? You could always invent a "medication shortage" and tell her it's back-ordered.

HB

Kibbee

DH’s neurologist prescribed Myrbetrig, in the hopes it might improve his urinary control. In DH ‘s case it did not make an appreciable difference. We finished out the 6 month prescription but did not ask for it to be renewed.
It is also a somewhat pricey drug. With Rx insurance our out of pocket cost was $50 per month, so $300 for the 6 months he used it. Without RX insurance it would have been $250 a month…yipes.

DLewis2024

Thank you all! Thank you Harshedbuzz for the article. She had OAB years before she was diagnosed with dementia at 76 and she also has Stage 3 kidney disease. She did try some other overactive bladder medications, but they weren't effective. I don't know which ones.

She was on Hydrocodone/tylenol for many years to manage back pain. While she took it "as needed" and, luckily, never became addicted, I believe it may have brought her dementia on earlier. Her mother did not show symptoms until her late 80's. I do not have any proof other than confirmation from a friend who is in the medical research field that they have found links between early onset dementia and the use of pain medications. We gradually removed the Hydrocodone/Tylenol last year.

She could have Vascular Dementia. She was diagnosed with Dementia/Altzheimers, but I am going to have her checked for Parkinson's. She was diagnosed almost 5 years ago now and the progression seems slower than Altzheimers, so intuitively it feels like that diagnosis may not be accurate. Is it me or does the diagnosis process not an "exact science". It feels more like a "process of elmination" or just deductive reasoning?

She appears to be sensitive to all medications. Even a single tylenol makes her very sleepy. Does anyone else have the same experience? She is taking Memantine for dementia and mertazapine for anti-anxiety and anti-depression. The Mertazapine seems to help depression, not sure the memantine is doing anything. How long do you stay on/continue those drugs and is there anything else out that is new for later stages?

harshedbuzz

@DLewis2024 said :

She could have Vascular Dementia. She was diagnosed with Dementia/Altzheimers, but I am going to have her checked for Parkinson's. She was diagnosed almost 5 years ago now and the progression seems slower than Altzheimers, so intuitively it feels like that diagnosis may not be accurate. Is it me or does the diagnosis process not an "exact science". It feels more like a "process of elmination" or just deductive reasoning?

Alzheimer's typically progresses more slowly than VD. People with Alzheimer's can live 10-15+ years beyond their diagnosis especially if they weren't diagnosed as Early Onset (before age 65 or so). My own dad had LO for at least 13 years based on obvious symptoms.

This handout includes a staging tool for Alzheimer's— note the average duration of each stage.

http://file:///C:/Users/lshor/Downloads/Tam-Cummings-LLC-Handouts%20(2)%20(4).pdf

Diagnosis is generally started using a process of elimination starting with bloodwork to rule out things like vitamin and hormone deficiencies that can mimic dementia. Mom's PCP included Lyme Disease which can sometimes cause brain fog, memory and focus issues as well. New is imaging like a CT scan or MRI to rule out things like tumors. These can also show evidence of past strokes and atrophy.

Beyond that PET scans/lumbar puncture can be used to diagnose Alzheimer's. Neurocognitive testing can also help with diagnosis based on the pattern of losses and relative strengths.

HB

MN Chickadee

Mirtazapine will make a person sleepy. Make sure she takes it at night. We used it as a sleeping medication for my mother with Alz with the added bonus of the anti-depressive being secondary. She tolerated Aricept fine but not memantine, that made her very sleepy and she had GI issues from it. We discontinued it after a few weeks. You might ask her doc about stopping it for a few weeks and see if you notice a change, good or bad.

She will most likely be incontinent no matter what you do now. It's pretty inevtiable with dementia. The brain controls those signals and urges to urinate, and eventually it stops working right. Incontinence needs pretty constant attention. It's a big reason many families end up moving their loved one to a care facility. You may find medication for her previous issues helps or makes it worse, but just assume she is incontinent now. Bowel incontinence will follow, so having the person already in depends is helpful. Almost all PWD reach a point where they need to wear Depends and have assistance with toileting and clean up and taken to the toilet on a schedule to avoid messes. You may have to find therapeutic fibs for the urology appt if there isn't anything they can do.. They are booked out a few months etc. Rinse and repeat.

SDianeL

She may be at the stage where someone has to accompany her to the toilet. At this stage some don't remember how to pull down their pants or how to sit down on the toilet. They start putting their clothes on backwards or not knowing how to use buttons or zippers. If you haven't done so, please read the book "The 36 Hour Day" which really helped me after my husband's diagnosis.

H1235

The thing I struggle with is, whether the medication is working. Mom has been on myretrig for years. She still manages bathroom business herself, but I think she is probably a very poor judge of its effectiveness, probably end stage 4. She wears depends all the time.

M1

Well it's obvious from the incident you describe that the medicine is not preventing her from being incontinent. That was my point i was trying to make previously. No point in continuing it IMHO.

harshedbuzz

Cobbling onto what M1 said, are you certain she is taking the medication as prescribed. If she ran out or missed a dose could that have caused the incident?

HB

DLewis2024

Thank you all. Have not read 36 hour day. Have it on my night stand but was being a bit of an ostrich. Have seen what feels like rapid changes in the last 90 days. It seemed to be a rather sudden to us. Time to read the book and begin to get some help. I will talk with her Doctor about the incontinence drugs and the other drugs. I will go our family Dr route because she's really adament that she needs to go to the Dr. and I'll message the Dr. ahead of time. It doesn't hurt to double check for a UTI, the home test strips are good, but aren't infallible.