Toileting issues in someone i thought was solidly in stage 5

tigersmom

Hi, everyone. Second post here because I am perplexed. DH was diagnosed with mild dementia, combination of AZ and VD, at the end of June 2021. Recently some toileting issues have cropped up. As long ago as February 2022, I noticed he was reluctant to use a public toilet -- even in a health care setting when it was a single room and I promised to stand outside. (This was a problem since his sister was hospitalized twice in the first half of the year.) He would hold it until we got home, then make a beeline to the toilet to urinate. Usually he got his underwear off in time. Around the same time, he frequently forgot to flush after urinating, particularly at night. And his aim, to be frank, was not so hot. In July of this year, I began finding toilet tissue in the trash can after he pooped. (This seems to have abated for the moment.) In August, he partially wet his underwear after waiting too long to go and not getting it off in time. And in recent weeks, I have found urine-smelling underwear once in the hamper and, once, in the dresser drawer beside the clean underwear (ugh). This is not a daily occurrence, but it concerns me because I had figured him to be solidly in stage 5. At his last neurologist visit in September, the doctor did not say, but at the previous March visit he described him as "still mild with some slight progression to moderate." In September, before his appointment I described these issues in an email to the doctor, and also noted his failing remote memory and his need to have his clothes set out for him. So my question is, am I and the doctor kidding ourselves and is he really in stage 6? I would not describe DH as urine incontinent yet, but that seems to be where we are heading. I have read on these good boards that VD does not necessarily progress the same way as AD, and that it often moves faster.  Would really appreciate your thoughts and experience on this matter. In the meantime, I am reminding him to go every few hours and buying another bottle of Clorox 2.

toolbeltexpert

I would say yes stage 6, but that is only mho.

Stewart

saltom

DH also has a VD/Alzheimers diagnosis. At a phone consult last June, the doctor said she though he was in mild to moderate stage.  Even then  DH had bowel and bladder incontinence. He has been in disposable underwear for a good six months.  To some degree the incontinence comes and goes. I have to remind him constantly that he can pee in the throw away underwear rather than try to get to the toilet on time where he pees all over the floor and his clothing. Once in a while he knows he has to poop and often he thinks he has to pee but it is an effort in futility. I have seen dementia progression but really don't know what stage it is.  We just live with it. This forum is really helpful in seeing the patterns. Thank you everyone for all your postings.

Quilting brings calm

https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/#stage5

Some of what you describe is stage 5 ( see link above).   Many patients seem to exhibit symptoms of various stages at the same time.  Some people say that the highest stage from which any symptoms is displayed is the stage they are in. However sone people judge it by what  stage seems to fit the loved one best.  In addition, the average length of time in stage 5 is a year and a half. However each patients progression is different. 

Iris L.

Could any of this be related to prostate issues?

Iris

Ed1937

I think Iris might be onto something. Prostate issues can cause problems like that. It might be worth having him checked for that. Possibly also a UTI???

FWIW, when my wife became urinary incontinent, I would have described her as stage 4 or 5. She wore pads before dementia, but now I decided to buy incontinence briefs to ask her to try out. She agreed, and I got rid of her regular panties quickly. She had no trouble accepting the briefs. When she became occasionally fecal incontinent, I figured she was stage 5. Shortly after, I was guessing maybe stage 6.

If he is still having trouble with his aim, could you tell him there is a problem with the tiolet, and ask him to pee in the shower? Much easier on you.

harshedbuzz

tigersmom-

I wonder if the issue with public restrooms earlier in the course of his disease was somehow related to not being sure how to operate different models of toilet/urinals or a sensory issue with self-flushing toilets and loud hand dryers. Technology was one of my dad's own first losses. 

That said, the rest sounds like a textbook transition towards incontinence. Many caregivers report a period in which toilet etiquette is lost. The lack of flushing, the disregard in tidying up after poor aim and leaving soiled tissue in random places are often a harbinger of incontinence to come. IMO, this is a function of social filters and empathy as much as memory.

My dad's incontinence was exacerbated by radiation damage for unsuccessful treatment for prostate cancer and by the growth of the organ from tumors.  I believe it caused him to develop incontinence at a time when her had no other symptoms in stage 6.

HB

tigersmom

Iris and Ed, you raise interesting points. DH's prostate numbers were historically so low that his PCP used to joke he was a girl, but a few years have gone by since they were checked. Could be a good idea, and to check for UTI at the same time. Thank you to you both for that suggestion, and to everyone else who replied. Your experience with these issues is invaluable to me. This is a hard road to travel without help, and it is truly appreciated.

ghphotog

I know all too well, the soiled tissue in the trash can. My DW doesn't know what to do when she needs to poop or how to clean herself. She starts sobbing like she did something wrong and I have to tell her that what she is doing is normal. We all do it. I wonder if she was scolded a lot when she was child learning to potty.
I estimate she is in Stage 6 somewhere. We have a neuro visit in December so maybe we will know more. She still doesn't accept she has dementia and I don't remind her. 
She won't wear depends at all. She gets extremely emotional when I try to get her to wear them so I just make sure I have plenty of clean clothes and underwear ready.

Amy Joy

 Hi tigers mom

Yeah it’s not easy for anyone to have accidents as this can happen to anyone.

It’s probably prostate gland to blame.

Older people often suffer from bladder problems.

tigersmom

ghphotog, I can so relate to your DW's fear of doing something wrong. My DH asks for permission to do everything -- to go to the toilet, to turn out the lights, to get a glass of water. My response is always, "Of course you can; you don't need to ask." But he always does. He is desperately afraid of doing something wrong. I sure wish I could understand that better.

tigersmom

harshedbuzz, you might have hit the  nail on the head with the technology issue in public restrooms. Today DH and I took a field trip to a large department store. Since it was a new, modern building and a wonderful store, it had excellent toilet facilities -- a series of individual rooms clearly marked for men, women, all genders, and families. I persuaded DH to go in to one with me. He used the toilet without incident. There was no handle to flush -- self-flushing, with electronic eye. There were no handles on the water faucet for the sink -- another motion-sensitive dispenser. Same with the soap. To get a paper towel, you had to wave your hand in front of the wall dispenser, which looked empty but was not. There were no instructions for any of these things. I think I understand why he doesn't want to use them now.

Arrowhead

My wife has been wearing diapers for about 6 months. She has mostly lost bladder control although she still uses the toilet for most bowel movements instead of her diaper. When she does, she also puts the TP in the trash and never flushes. 

In spite of his incontinence, your husband could still be in stage 5. My wife started exhibiting some symptoms of stage 6 while she was still in stage 4.

JJAz

"In the meantime, I am reminding him to go every few hours and buying another bottle of Clorox."

 I certainly hope that that he's not still driving!