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Incontinence defined
McCott
Posted: Saturday, September 21, 2019 6:12 AM
Joined: 8/22/2017
Posts: 365


During a week and more of difficult medication induced constipation, I was finally able to speak by phone with an RN.  Husband's PCP was on vacation, and his backup MD suggested -- get this -- going to the ER for constipation -- was this just CYA?   In any case I spoke to an RN who -- very helpfully -- defined 'incontinence' for me.  I am so grateful to her.

Incontinence turns out to be defined -- more or less -- as 'not knowing when you have to go' and/or having no control over when you have to go, either #1 or #2.  If you know you have to go, but don't know where to go, you may cause problems but are not actually 'incontinent.'  How interesting!  

So I learned that my stage 6 husband is not officially 'incontinent' since he knows when he has to go.  It just so happens that when he has to go, he doesn't know where to go.  We have been in this house for 26 years, but he no longer knows where the bathrooms are, on either floor.  Our son came by to find his father peeing off the deck, and saying 'Hi -- how are things going?' like it was not an issue to be peeing off the deck in full view of neighbors.

Tonight, he got out of bed, walked past the bathroom where he has gone for 26 years and peed in the laundry room down the hall. But according to the RN I spoke to, this is not officially 'incontinence' since he knows he has to go, but just doesn't remember where to go.  So Depends might or might not help -- 'depending'  as they imply on the circumstances. It seems that I need to be on call 24/7 to guide him to the actual toilet.  Was I derelict in my caretaking duty not to have been there when he went to the laundry room to pee?

Any suggestions?  It sounds to me as though Depends might just be the underwear he takes off to pee.  Plus I realize that we are not yet dealing with #2, except due to constipation due to back pain, theoretically a separate issue (which I have been dealing with obsessively for two weeks due to pain medication prior to a recent spinal cortisone shot -- hoping that dials down).  

Advice welcomed.  Someone here mentioned an alarm that is triggered if they step out of bed.  Please let me know more about that, as it sounds like what I need right now.


Doityourselfer
Posted: Saturday, September 21, 2019 6:47 AM
Joined: 9/5/2017
Posts: 351


Interesting.  Then my husband is not incontinent yet because he knows he has to go but doesn't know where our bathroom is either.  Many times he doesn't know what to do when he's in there either.  During the night (really early morning) he pees in his pants on his way to the bathroom, whether I show him where it is or not.  

An alarm might be a good idea.

I wonder how soon incontinence begins then after they can't find the bathroom.  Is this a pre-incontinence behavior?

 


Katy sue
Posted: Saturday, September 21, 2019 7:40 AM
Joined: 9/24/2016
Posts: 307


This is where the roller coaster goes up and down small hills before the final plunge. It was my experience that DH knew he had an urge but was getting room location wrong. Using the bathroom is a very long term memory skill. In our case, we had only been in our new home for a year so I understood why he was confused. Nevertheless, I think drawing a blank on where to put it precedes actually not knowing that they have an urge. This behavior coincided with a rapid decline in the spring of 2018. I had to be on constant alert and convinced him to use the bathroom wherever we were every 2 hours, sometimes more often because I also recognized behavior signs of urgency the same as one might see in a child. It was at this time I prepared the bed also and had a change of clothes bag ready for travel .Also supplied up on depends. So we went on like this until September last year when I took him to ER for med eval. It was while he was in the hospital that he was officially introduced to depends and became officially incontinent according to the definition. 

Incontinence brings a heavy burden indeed. It affects the caregiver’s life even more than the patient’s life. Preparation is key and a vigilant eye. 


Beachfan
Posted: Saturday, September 21, 2019 10:54 AM
Joined: 2/1/2018
Posts: 338


McCott wrote:

. It seems that I need to be on call 24/7 to guide him to the actual toilet.  .

 

McCott,
You have hit the nail on the head in my opinion.  That is the story of my (current) life, unfortunately.  My DH is not incontinent at this point, because I won’t allow it.  Luckily, he can go hours before needing to use the toilet and he typically sleeps through the night without a toilet break.  I am a light sleeper and hear him if he gets out of bed.  But if he has to “go” and I am not in the immediate vicinity, he will take down his pants and relieve himself wherever he is.  (Just yesterday morning, I thought he was still soundly asleep and walked my granddaughter outside to the bus stop.  10 minutes and when I returned, he was standing outside the bedroom door in a puddle, grinning from ear to ear......”Good Morning”). He has had 2 fecal misfires over the past 5 years, maybe, and probably 10 urinary “accidents”.  I take him to the toilet before we leave the house (or if I need to leave); if he stands up suddenly and starts pacing, that’s usually an indicator.  He has not used a toilet alone, or independently for probably 4-5 years now.  (Snuck him into the ladies’ room at Giant yesterday on the 4 hour drive to the shore.).  24/7 vigilance is exhausting and annoying, but it beats cleaning up.  

 

As you mentioned, Depends are not practical;  he still feels the urge and would just remove the Depends to go.  I mentioned seeing a bedside alarm on this site and did investigate.  I think I googled  “bedside alarm” or “floor alarm” or something like that and found it.  At any rate, they’re out there for purchase.  Good luck; sorry to validate the 24/7 need for surveillance but that’s how we roll. I realize it could all go South in a New York minute.  I think you have mentioned that you still work outside the home, so your situation might be more complicated.  You are not alone.  

 

 


Beachfan
Posted: Saturday, September 21, 2019 11:00 AM
Joined: 2/1/2018
Posts: 338


Google “bedside floor mat alarm”. There are several sites to check.  Sorry, I don’t know how to share links.  Good luck.
Jo C.
Posted: Saturday, September 21, 2019 11:10 AM
Joined: 12/9/2011
Posts: 10049


Hello McCott, I am sorry for what is happening and can imagine what a challenge this must be.

Here is a link to a floor mat.  Some use a cord, others are cordless. Some have an alarm that sounds in the person's room; others have a remote alarm if one sleeps in a different bedroom. If you use Google, you can find multiple different kinds  of these mats at varying prices. They are also good to use in front of doors if one's LO tends to try and wander outside:

https://www.amazon.com/Smart-Caregiver-Economy-Cordless-Warranty/dp/B06XMY43G8

While this probably is not a factor, it may possibly be that he also feels more urgency; it may be worth it to have him checked for a UTI just in case this is a contributory factor.

J..


HMW
Posted: Saturday, September 21, 2019 11:42 AM
Joined: 3/5/2015
Posts: 46


Hi  McCott

My husband went thru this stage. It was the hardest part of this journey. He would pee and poop wherever his confusion prompted. One time I caught him about to pee into a glass front bookcase with rare volumes.

I finally figured out that if I put very snug thigh length underpants over his diapers he could no longer pull them down or pee through the leg hole.

Life with him immediately improved so much!

Wish you luck with this. My husband is unable to get out of bed anymore or turn over. I miss those times I had to chase him about the house to change him. At least I could take him with me places. Now he is confined to bed and cannot even transfer to a wheelchair.

HMW


Crushed
Posted: Saturday, September 21, 2019 12:07 PM
Joined: 2/2/2014
Posts: 4673


 

This is fairly typical for medicine which defines conditions by the organ or system that needs treating not the holistic problem caused by the condition.  E.G. is Infertility a reproductive or a Mental health issue? Blindness is not very medically interesting, all the issues are social.

Young onset Alzheimer's disease is a massive SOCIAL/ Situational problem but medically it is almost indistinguishable from "other" Alzheimer's disease 

ETC ETC ETC

 


Jo C.
Posted: Saturday, September 21, 2019 12:15 PM
Joined: 12/9/2011
Posts: 10049


For those whose LOs are farther along so they would not be as highly upset about it, Buck and Buck adaptive clothing catalog has some great clothing and are very customer friendly.

They have an entire line of clothing as well as nightwear for both men and women that look just like regular clothing, pants, shirt, and even sweaters; they have faux buttons and closures AND they close down the back rather than the front so that the person cannot undress themselves or get into their adult diapers.

For some, depending on where the person is in their dementia, this can be helpful. Buck and Buck also will shorten garments at no extra cost and will put name tags in garments at no extra cost and they have a generous return policy as I found out even if garments have been shortened or tagged.

 https://www.buckandbuck.com/

J.


Gig Harbor
Posted: Saturday, September 21, 2019 3:27 PM
Joined: 3/10/2016
Posts: 569


You might try having a urinal handy in the bedroom and a mat alarm to let you know when he gets out of bed. That way you can get to him and help him use the urinal.

For the suggestion of the doctor to have him go to the ER. That is so common among elderly people who don’t have dementia. I worked in ER’s for years and many elderly come in and state “I need to be dug out”. I kid you not. When asked what they had tried many would say that nothing worked and it was easier to come in and have someone manually disempact them. Needless to say they were our least favorite patients.


PaulsWife
Posted: Sunday, September 22, 2019 8:40 AM
Joined: 3/1/2017
Posts: 56


DH and I went through all the stages of approaching incontinence over the last year. Some things helped, but mostly there was a lot of clean-up required. 

My DH, diagnosed 5 years ago as EAOD started urinating in odd places at night when he couldn’t find the bathroom 4 years ago. I was able to mostly solve that problem by providing lights to guide him. A year ago he started periodically wetting his pants. He knew he needed to go but just couldn’t get to the right place or get his pants open in time. He started wearing Depends but sometimes that actually caused additional problems because he would try to go, but couldn’t figure out that he had to pull them down. I tried pads instead, but that really didn’t help a lot. 8 months ago he started peeing on the floor on his way to the bathroom. 5-6 months ago he truly became urine incontinent because he had no idea that he had to go, so I had to check his Depends regularly and change them when wet. About 3 months ago he became bowel incontinent because he doesn’t know when he needs to go (or even if he already has in his pants). Sometimes I can get him to produce on the toilet but he doesn’t really understand what he is doing.

Sorry I can’t help more but every time I thought I knew what the issue was (so maybe I could figure out a solution), he moved closer to actual incontinence and the problems changed.

 


McCott
Posted: Tuesday, September 24, 2019 1:08 AM
Joined: 8/22/2017
Posts: 365


Katy sue wrote:

This is where the roller coaster goes up and down small hills before the final plunge. It was my experience that DH knew he had an urge but was getting room location wrong. Using the bathroom is a very long term memory skill. In our case, we had only been in our new home for a year so I understood why he was confused. Nevertheless, I think drawing a blank on where to put it precedes actually not knowing that they have an urge. This behavior coincided with a rapid decline in the spring of 2018. I had to be on constant alert and convinced him to use the bathroom wherever we were every 2 hours, sometimes more often because I also recognized behavior signs of urgency the same as one might see in a child. It was at this time I prepared the bed also and had a change of clothes bag ready for travel .Also supplied up on depends. So we went on like this until September last year when I took him to ER for med eval. It was while he was in the hospital that he was officially introduced to depends and became officially incontinent according to the definition. 

Incontinence brings a heavy burden indeed. It affects the caregiver’s life even more than the patient’s life. Preparation is key and a vigilant eye. 

********************************************************************

 Thank you Katie Sue for this outline of what lies ahead.  I also saw your last post about your husband's losing mobility, and I just wanted to express my sympathy for what you are living through -- you and he are both way too young for this.  I have to admire the fact that your posts are so even tempered and lacking in rage -- a level of acceptance I have not gotten to. 
 My thoughts are with you,  Mary


McCott
Posted: Tuesday, September 24, 2019 1:17 AM
Joined: 8/22/2017
Posts: 365


HMW wrote:

Hi  McCott

My husband went thru this stage. It was the hardest part of this journey. He would pee and poop wherever his confusion prompted. One time I caught him about to pee into a glass front bookcase with rare volumes.

I finally figured out that if I put very snug thigh length underpants over his diapers he could no longer pull them down or pee through the leg hole. My husband is unable to get out of bed anymore or turn over. I miss those times I had to chase him about the house to change him. At least I could take him with me places. Now he is confined to bed and cannot even transfer to a wheelchair.

***********************************************************************

HMW -- Thank you for this reply -- I'm sorry he is confined to bed, and I fear that's where my stage 6 husband, age 71 is headed, as his walk turned in a shuffle in August and now he takes one or two short hesitant steps at a time.  

I miss the time when I thought it was a big issue that he put recycling items into yard waste or garbage, and vice versa over all three categories.  Right now that seems downright amusing (although it was a headache sorting everything out before pick up day).  I'm sure you're right that I will look back on "where's the toilet?" games as just one of the final steps towards the every receding end game.  Is he still at home?  Mary



McCott
Posted: Tuesday, September 24, 2019 1:35 AM
Joined: 8/22/2017
Posts: 365


Beachfan wrote:
,
You have hit the nail on the head in my opinion.  That is the story of my (current) life, unfortunately.  My DH is not incontinent at this point, because I won’t allow it.  Luckily, he can go hours before needing to use the toilet and he typically sleeps through the night without a toilet break.  ...He has had 2 fecal misfires over the past 5 years, maybe, and probably 10 urinary “accidents”.  I take him to the toilet before we leave the house (or if I need to leave); if he stands up suddenly and starts pacing, that’s usually an indicator.  
He has not used a toilet alone, or independently for probably 4-5 years now.  (Snuck him into the ladies’ room at Giant yesterday on the 4 hour drive to the shore.).  24/7 vigilance is exhausting and annoying, but it beats cleaning up.  Good luck; sorry to validate the 24/7 need for surveillance but that’s how we roll. I realize it could all go South in a New York minute.  I think you have mentioned that you still work outside the home, so your situation might be more complicated.  You are not alone.  

***************************************************************

Hello Beachfan -- You are my hero of the hour -- "you will not allow it!" -- more power to you, and admiration for making the four hour drive to the Jersey shore --  

I grew up in the Oranges and we went 'down the shore' mostly on day trips, but sometimes staying with an aunt in Bradley Beach.  Then my youngest sister (born when I was 14) had her post-wedding family gathering at an upscale friend's beach house in Spring Lake, which turns out to have been a kind of upper crust Catholic enclave -- I never knew there were such posh places on the Jersey shore until then : ) 

Yes, I'm still working but have been allowed to schedule my classes in the afternoon; our son works a very early shift at the airport, so he will be back shortly before I have to leave.  He has moved back in and has been a very great help in these past months.  He and his wonderful girlfriend have put clever devices on the laundry room and other doors, they have wet vacced the rug (the one I luckily did not have replaced) and been over the top helpful.

I really miss the shore -- in Seattle even the lakes are too cold to swim, except with wet suits.

 

 

 



JJAz
Posted: Tuesday, September 24, 2019 7:01 PM
Joined: 10/21/2016
Posts: 2452


McCott wrote:
But according to the RN I spoke to, this is not officially 'incontinence' since he knows he has to go, but just doesn't remember where to go.  So Depends might or might not help -- 'depending'  as they imply on the circumstances. It seems that I need to be on call 24/7 to guide him to the actual toilet.  Was I derelict in my caretaking duty not to have been there when he went to the laundry room to pee?

Derelict is a harsh word, but in a sense, yes.  The stage where you are now is very difficult.  For us, it lasted for over a year.  Any time DH was on the move, I followed him to ensure that he didn't pee in the laundry basket, sink, trash can, corner of the room, plant container, etc . . . all of which he did until I trained MYSELF to be there for him. 

Blessings,

Jamie



JJAz
Posted: Tuesday, September 24, 2019 7:06 PM
Joined: 10/21/2016
Posts: 2452


Beachfan wrote:
Google “bedside floor mat alarm”. There are several sites to check.  Sorry, I don’t know how to share links.  Good luck.
We used a 'Smart Caregiver Motion Sensor and Pager' from Amazon for $28.88.  I liked it better than the floor mat alarm because I could use it in any room.

Caring4two
Posted: Wednesday, September 25, 2019 6:43 PM
Joined: 7/6/2014
Posts: 645


 https://libertyhealthsupply.com/smart-caregiver-wireless-bed-alarm-alert-20-by-30-inch-pad/?cmp_id=902242948&adg_id=45362680016&kwd=&device=t&gclid=EAIaIQobChMIlvuDlZLt5AIVh7zACh2NNw85EAQYCCABEgJ-ePD_BwE

This is the unit I used. I kept the alarm with me in a different room. It sounds like a 

doorbell. I duct taped the pad to the mattress just below his pillow. That way when he started to 

get up, it would go off and I could get there in time to help him.