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Incontinent
Michael Ellenbogen
Posted: Saturday, February 27, 2016 9:04 AM
Joined: 11/30/2011
Posts: 4036


Is there any one here who is willing to talk about this. I want to know more about incontinent. Of course it needs to be someone who already has started down that path. I do not want to hear from someone that has not experienced it. I am trying to understand what symptoms you may have had before it that you may have had and could not explain. I would think it start to happen about a year before that we just don’t know that is the beginning of the problem.  What little things you may have noticed. I am more than happy to have this conversation privately as I know it is not one we want to talk about.  Thanks

 


alz+
Posted: Saturday, February 27, 2016 4:37 PM
Joined: 9/12/2013
Posts: 3608


Not realizing my bladder was full until I stood up. Used to wake up at night to pee, now I wake up  to let dog out so she did not wet bed and peed on way to front door.

Remedy to pee when ever I go past bathroom.

Not a big deal for me. The one that is creepy is to not know I have pooped and then pull up clothes and smell myself and have to wash underpants and change clothes. that one is infrequent but has to do with either loss of feeling urge and movement. Might also be nerve damage.

remedy is buying wet wipes and use them to clean back end whenever I pee, just in case.


TheSteven
Posted: Sunday, February 28, 2016 8:27 AM
Joined: 10/11/2014
Posts: 167


Hi Michael,

The issue for me was that the mercury from my amalgams had affected my pituitary gland which is near base of brain near the hypothalamus. Depending on where the mercury binds it causes damage. My endocrinologist said that my pituitary no longer creates enough of a hormone to allow me to control holding it long so I go often whenever I can. Before I go out, I go to the bathroom and when I get somewhere I go to the bathroom again and I try not to drink anything before I go out. It can be tricky if I drink something and then go drive somewhere because I have needed to really go 30 minutes later even if I voided my bladder just before I left.


That happened once when I had passengers in the car and I when I got to my destination I had to rush to the bathroom and I did wet myself a little. It was not a great moment when my son and his girlfriend at the time was in the car. Other times when I was by myself I had a container and I could pull over by the side of the road and go.


For solutions, my endocrinologist prescribed desmopressin and I used to take a half pill in the morning and another half at night but I would still have to wake up too many times in the night. Now I take the full pill at night and wake up less and go more often in the day. This prescription requires that I get my blood tested every three months and see the endocrinologist. The other thing I do is to use a small mattress pad that is absorbent on one side and waterproof on the other. It has saved me once. It is not a full pad so my wife doesn't have to have it under her. It is a soft plastic waterproof material so it does not crinkle.


llee08032
Posted: Sunday, February 28, 2016 9:20 AM
Joined: 5/20/2014
Posts: 4408


Baby wipes cost less but you can't flush them in the toilet. Had plumber give me a funny look. Now I keep plastic bag in trash can so I can dispose the baby wipes. Also when traveling anywhere, even if you're just running errands you need to pre-plan the locations of lavatories along the way. Beverages with caffeine and I think lot's of sweets will increase urine output. A sanitary napkin can help with small leaks for women. 
llee08032
Posted: Sunday, February 28, 2016 9:25 AM
Joined: 5/20/2014
Posts: 4408


I am having hard time remembering if I took shower and remembering to take shower?
jfkoc
Posted: Sunday, February 28, 2016 12:27 PM
Joined: 12/4/2011
Posts: 20254


Michael..While not actually addressing your post this might be of interest:

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=136


Michael Ellenbogen
Posted: Sunday, February 28, 2016 1:35 PM
Joined: 11/30/2011
Posts: 4036


While that may be a good article it does not include the views of real people who are living with dementia. All text book crap. Until people like me don’t start asking people look here who are the true experts one will never know what this disease is like. There must be symptoms that occur months in advance that I believe will eventually lead to it. That is what I am hoping to gain from this discussion. By me knowing I will become better educated to share it with the world and to hopefully help myself prepare as It will most likely happen to me. I am looking to see the vision of when that change is approaching.

 


jfkoc
Posted: Sunday, February 28, 2016 2:40 PM
Joined: 12/4/2011
Posts: 20254


I did  understand what you were asking but your post prompted me to take an internet look at incontinence and how it related to PWD. 

Sorry it was all "text book crap" I feared it might be but it did say that incontinence does not always accompany dementia and that when it does it is more likely to be a component of older persons.

 My husband died when he was 86,  had lived with a diagnosis of some sort for almost 10 years and was uninary incontinant for his last few months.

Again, this may not be the specific info you are looking for but it might mean something to another member here.

Hopefully someone who has dementia will give you the answer you are looking for and that it will be information helpful to all.


Michael Ellenbogen
Posted: Sunday, February 28, 2016 2:49 PM
Joined: 11/30/2011
Posts: 4036


Now that I found very helpful. was uninary incontinant for his last few months.


Michael Ellenbogen
Posted: Sunday, February 28, 2016 2:54 PM
Joined: 11/30/2011
Posts: 4036


I am sorry if I sound so negative but text books are so wrong and not complete. Just the other day they final said mind games don’t delay AD. I have been saying that for years and people all over said I was wrong. It was not meant to you.

 


jfkoc
Posted: Sunday, February 28, 2016 5:31 PM
Joined: 12/4/2011
Posts: 20254


You did not sound negative to me...
alz+
Posted: Sunday, February 28, 2016 8:17 PM
Joined: 9/12/2013
Posts: 3608


My Dad was never incontinent.

Women who have had children often have these issues so I got used to young.

L lee - I but wet wipes that are flushable and safe for septic system. at least they SAY flsuhable and safe for septic!

Some even have aloe in them. 

I also use mini pads if going to be be away from home for long.

Most people are afraid of being left helpless and wet or messed, not so much the day to day stuff we can handle ourselves.


jfkoc
Posted: Sunday, February 28, 2016 8:59 PM
Joined: 12/4/2011
Posts: 20254


Alz+ ..I would not flush

http://abc7ny.com/archive/9383310/


Lisa428
Posted: Sunday, February 28, 2016 9:48 PM
Joined: 12/5/2011
Posts: 795


Alz+,

I would not flush any wipes.  They claim to be flushable but in reality they are not!

Wipes can cause serious blockages in toilets and drains.  Had a personal experience with this while taking care of my Mom.

 

Michael,

My problems with incontinence started a couple of years ago with bedwetting.

I hope this helps.

Peace and Hope,

Lisa

 

 

 

 


Unforgiven
Posted: Monday, February 29, 2016 1:12 PM
Joined: 1/28/2013
Posts: 2660


Yes, the packaage for the moist toilet paper wipes says flushable, but our plumber says different.  Always trust the plumber.

For my mother, she wears disposable underwear with extra continence protection inside to keep things fresher between changes.  For disposal, we have a small wastecan with a lid, lined with a grocery pastic bag.  When it's full, we just tie up the handles and take it to the outside trash can.

For women of a certain age, urinary incontinence is a common issue, dementia or not.  Men get more years of grace, but eventually, nerves and muscles become weaker.  I really don't know how incontinence can be predicted.  Probably with the first accident.  In that case, wear some sort of protection so you don't have to worry.  No shame in it.  We're just dealing with life.


TheSteven
Posted: Monday, February 29, 2016 2:00 PM
Joined: 10/11/2014
Posts: 167


Michael,

My symptoms started just before I got my diagnosis about 1.9 years ago.  If I drink water or tea I will need to go to the bathroom in about 30 - 45 minutes.  A real need to pea that you can't hold it.


a_step@a_time
Posted: Sunday, March 6, 2016 4:27 AM
Joined: 11/21/2015
Posts: 237


CCan't incontinence also be sign of MS?

MMy pee needs change day to day but I thought it related to caffeine intake.

MMy urine smells so I usually wear feminine pad in case I leak.

MMaybe this could be a medication side effect.


alz+
Posted: Sunday, March 6, 2016 6:37 AM
Joined: 9/12/2013
Posts: 3608


Thank you L lee and all else who warned me not to flush wipes!

who knew? Have been using them for a couple years off and on, but after UTI kept coming back I found them really helpful and have not had a UTI since.

We have septic system so I will stop today and have tank pumped in summer.

If it isn't one thing it's another!    

I have been off boards more as doing much more and then much more tired.

Love you all!


BillBRNC
Posted: Sunday, March 6, 2016 8:43 AM
Joined: 12/2/2015
Posts: 1018


Since we are talking about this, I might as well ask a question that has been bug me for a few months. I can get to the bathroom fine and use it fine, fingers staying crossed. But I have been having this odd issue with peeing. Around a third to half of the time, I miss the toilet off to the left and hit the floor. This happens even when I'm thinking about it and trying not to. It just happens. I adjust, but still end up cleaning the floor and the rim. I've assumed this is just me, not the Alz. But I guess I should ask, because it has been going on for a year or more, getting slightly more frequent in happening with the passing of each month. Is this Alz, or is it just what? I really can't believe I'm asking this question. But it is Sunday, so I can't think of a better day to ask. Oh, and I never miss off to the right. Opinions?
The_Sun_Still_Rises
Posted: Sunday, March 6, 2016 9:31 AM
Joined: 7/24/2015
Posts: 3020


I think confusion bath room be part disease process...an it seem get worse worse as go it...least for me. 

Most time can click in auto-pilot do bath room ok, like in past.  But other times...I have no clue what I be do there.  My body does no seem be know how make stuff come out eith...like muscles confused too. 

It takes a lot (a lot a lot) of self reflection think out...sort out...*what* exactly issue be you.  Is it visual processing?  Is it attentional?  Like is you attention no being able stay focused?

Once you be sort out *what* exactly be starting fail you...then work-s-rounds be come more clear. 

Some peop put contrasting duct tape their toilet seat so they can tell it apart from floor.

I find I over come attentional issues by constant self talk...I be do this, I be do this, I be do this...until I am done be do that. 

I now have signs OT be make me for bath room.  There be great one TP with hand get some...that cue me wipe.  This huge help reminder me...

You no know how much stress it be cause you struggle bath room until you get help struggle then in relief you see how hard was you. 

I find Depends Sillouettes fit snug with no much noise issue or bulk.  Doctor be ordered them...they come from medical supply an delivered door..so no eve have go store buy.  I thought would be hard make adjustment them...but I find huge relief instead it...it feel cleaner than pad.  An I had no idea stress I be have if accident eve...until I no have have that stress an more.  Worker be had point this out me...I would no have connected why such relief I be feel it. 

I did no expect have bath room issues until be much later end of things.  I no think an one expects this.  It come as huge shock me.  It be some thing hard process through be cause it comes as hard reminder this be happ us...that we be march towards death...like daily reminder I am going be die.  I find that shocking me.  Hard take. May be others no find quite as hard take.  But I was no prepared for shock. 

I still be have no scripting way be...peop help me bath room.  I do no know how go there.  An in man ways, I do no want go there. But is needed. 

I wish there was special therapy us...that could help walk us through these stage changes...help show us how be them.  It seems extra cruel that we have be like cut brand new path self through dense jungle it...figure out for selves...re-invent wheel. At least seems so me...as further I go, seem crueler crueler this aspect.  Where be support us????  My brain no equipped figure this stuff out an more. I need no have figure it out an more. I need some one else be know this stuff tell us.

<3


KSR
Posted: Sunday, March 6, 2016 9:50 AM
Joined: 3/3/2016
Posts: 9


llee08032:

because i don't shower every day, some days just wash my hair, to help me remember if I have showered or not, I made a label with a label maker (the kind of label that is laminated) with M T W T F S S on it and stuck it on my bathroom mirror.

i use a dry erase marker and circle the days i showered, x the days I don't.

works most of the time...except when i forget to mark it


Jo C.
Posted: Sunday, March 6, 2016 10:56 AM
Joined: 12/9/2011
Posts: 12158


For males:    There are incontince pads and even incontinence briefs designed just for the male anatomy.   Poise and Tena both make the male pads that fit in the front of one's briefs and accommodate anatomy.

There are also a wide variety of such pads for women and they come in all sizes and shapes.   Some pads come in regulary length and the same pads can be purchased in long length depending on one's anatomy or needs.

Pads go from lightest of panty liners all the way up to very absorbant; thicker and longer. Some even have nighttime "strength."

Such pads are far more useful than general pads used for periods.   The incontinence pads are much more absorbant and have odor prevention capacity.   Poise especially has just come out with much thinner pads that are supposed to be just as absorbant.

When we had to use these for my LO; I found that the off-brands such as WalMart just did not do the job; they did not self-adhere well to undergarments and tended to bunch and be uncomfortable.  

Amazing the things we learn about on our journeys.

NOTE:  One can call these companies and request free samples of  their different pads.   Poise has a very active consumer line with both female and male reps to discuss needs.  Tena also has consultants to speak with.

It takes about six weeks to get the free samples in the mail, but nothing ventured, nothing gained.

J.


Unforgiven
Posted: Sunday, March 6, 2016 1:20 PM
Joined: 1/28/2013
Posts: 2660


Or you can man up and by them at the drugstore.  LOL

I've become quite the expert on continence products and why the science behind them differs from period  pads, which also have a wide range of sizes and uses.  I was having that conversation yesterday with my mother, who wears the disposable underwear and is okay during the day, but wakes up soaked.  I have provided her with liners to save on the underwear, but she gravely insisted they were simple pantyliners for periods.  I explained the gel lock core technology (also used in diapers) and how her continence products come from a totally different aisle, etc

 

I have become inured to purchasing all manner of 'embarrasing' personal products.  It's a basic fact of life for folks entering middle-age.  It's nobody's business what you're buying or why, or if it's for you or someone else.  You can even set up mail order for your recurring products at Amazon to save a trip.

 

The 'brand' products to work better in terms of easy use and how strong the self adhesive is, but I think Doc Leonards sells washable and reusable cotton continence pads for use for those who want to save the expense or want something just in case.
ndhme
Posted: Sunday, March 6, 2016 3:15 PM
Joined: 5/31/2015
Posts: 1159


BillBRNC wrote:
Since we are talking about this, I might as well ask a question that has been bug me for a few months. I can get to the bathroom fine and use it fine, fingers staying crossed. But I have been having this odd issue with peeing. Around a third to half of the time, I miss the toilet off to the left and hit the floor. This happens even when I'm thinking about it and trying not to. It just happens. I adjust, but still end up cleaning the floor and the rim. I've assumed this is just me, not the Alz. But I guess I should ask, because it has been going on for a year or more, getting slightly more frequent in happening with the passing of each month. Is this Alz, or is it just what? I really can't believe I'm asking this question. But it is Sunday, so I can't think of a better day to ask. Oh, and I never miss off to the right. Opinions?

 

 

BillBRNC

When I noticed my DH having the same issue, I started encouraging him to sit on the toilet (he was probably late stage 5).  At that time, I went online and found a urinal adapter (Amazon) for the toilet seat as I found that he didn't realize he had to ensure he was 'pointed' down or he would urinate between the seat and bowl and end up getting his pants, outside of bowl and floor wet.  In the beginning he was able to attach and remove the urinal which gave him freedom to toilet on his own and not make a mess which would ultimately agitate him. 


The_Sun_Still_Rises
Posted: Sunday, March 6, 2016 6:18 PM
Joined: 7/24/2015
Posts: 3020


For what it be worth...I have always appreciated the guys my life who be sit when they pee. <3

<3


TheSteven
Posted: Sunday, March 6, 2016 9:46 PM
Joined: 10/11/2014
Posts: 167


Bill,

I always sit down now to pee so I won't have that problem.  Takes a load off and is much cleaner this way.  My brother in law who does not have dementia also sits down too.  More due to age and might as well be get some rest.  We both had daughters, he two more than me so it makes sure that the toilet seat is down too.

 


Michael Ellenbogen
Posted: Monday, March 7, 2016 7:41 AM
Joined: 11/30/2011
Posts: 4036


 Wow you have given me so much. I did not want to share my issues until now. In fact I did not even think of some until someone here pointed it out as a issue.

 

I first must tell you that this issue scars the shit out me. I may probably be able to deal with it if I can control it and clean after myself but the minute it goes the other way I must check out.

 

I also do not know if my issues are related to the Alzheimer’s or can they also be related to the many medications I have now been taking. I am even in drug trials and that could even play a factor. I will never know.

 

I also have a problem with aiming at times. I could not understand why that was happening I was thinking that maybe I was not paying attention but even when I was I had issues. Luckily it does not happen that often. I will have to think about sitting as I have never thought about it. It also must take so much longer. I will become like my wife waiting so long. The problem is I already go to often as I have the urge to go. I have had that for at least 5 years but I also drink a lot of water. Not sure if that is normal. For me things get complicated as I also had some issue of lack of pressure at times. That real complicates things with the rest of the issues. There are times I feel like I need to go but don’t and 3 minutes later it works. I keep saying I need a plumber.

 

A little over a year ago I ended up in the hospital with major spasms in my stomach. Since that time I have been unable to eat many foods without serious pains. Lucky for me they make special pills for that and I will eat anything I want but have some pain at times. I don’t know where I would be without those pills as the pain is terrible.

 

I also self created a problem for myself a few weeks ago. I kept feeling like I had to go to that bathroom at times not realizing it was gas I need t0 pass. Well I kept holing it back to the point that I created anther issues. Now I need to remember to try to push gas out more frequently.  When you don’t it can build up to lots of pain. Its so weird how the things that happened so automatically and now we nee to manual make them work. Its like the autopilot system broke.

 

I truly thank you all for opening up so publicly here as I know this is one of those things that I even hate to talk about. I do hope someone else will learn from all this because people could be suffering right now because of this issues and caregivers may not even know it. I can tell you I never shared with my wife that sprayed myself when I was going to the bathroom. Not the type of thing one wants to say. If I was not capable of changing myself and need to rely on someone I may just be afraid to even let them know. It is downright embarrassing no matter how you look it.  


BillBRNC
Posted: Monday, March 7, 2016 8:03 AM
Joined: 12/2/2015
Posts: 1018


Dang, I sure hope my sometimes poor aim isn't an Alz thing. I'm not embarrassed so much as I'm just mad about it. I can't see expecting or accepting that my wife will clean up and clean me up. I just want to go into a facility and let someone being paid to do it do it. On the other hand, I don't want to even think about going into a place while I still feel like I'm reasonably independent. Heck, I'm still driving, and safely to my mind. I can argue politics and everything. I have given up caring much about finance and investments, but I put our investments and IRAs on auto pilot a few years ago, so we don't have to do a thing with them for the rest of our lives, other than withdraw and spend in keeping with our game plan. If we need more, then I guess my wife will have to decide how much more she can take out, but the basic investments won't change. I used to check the market every day, now I don't give a hoot. I much more interested in hitting the toilet rather than the floor. I sure hope this bad aim stuff isn't related to Alz. I can't even believe I'm writing about it, but I appreciate Michael bringing it up. Happy Monday, just another day to hopefully enjoy. It is really nice outside her in the NC mountains. Sunny and cool, almost early Spring.
BillBRNC
Posted: Monday, March 7, 2016 8:08 AM
Joined: 12/2/2015
Posts: 1018


Well, I guess I should confess on the driving thing. Last night when leaving a restaurant, I truned right into what I thought was a dedicated lane for exiting the lot. I was wrong. Just as I turned out a car came along and turned right into the same lot I was leaving. It was only then that I realized that the lane I was turning into was a through lane for regular traffic. If that guy had not turned right into the lot, I would have hit him dead in the side. Scared the whatever out of me. Anyone could have done it, as there was a ton of road contruction all over the place, making lane ID difficult. I don't know how much longer I'll be driving. I go on April 5 for a full second opinion exam at a major place. I plan to see what they have to say on the driving issue, then think about it. I drive fine most of the time, but some minimal amount of the time I don't do so well, like last night. Sucks.
The_Sun_Still_Rises
Posted: Monday, March 7, 2016 8:21 AM
Joined: 7/24/2015
Posts: 3020


Well that was just it, Michael.  In December I be lose all ability notice feel need go.  An when do go...it be like muscles no seem know what do.  Eventually they do.  An, like you, need help bath room was time I said was time me check out...only I still have no got all affairs in order...so now I be stuck trying figure out how make *this* ok...how live with *this*...while be hurry up get things done. 

It was huge shock me still be as aware as am...I did no expect that.  I do no feel this good thing...so I chalk all peop false belief we lose aware up their wishful thinking...I too wishful think wish no as aware all this. 

Things learned help go muscle issue...sit down help think (least for female)...I find rocking bout changing position help it go.  Number 2 there be yoga position of tilting pelvis eve so slightly forward...an that seem open up things in there help go...so I do that as well.  Turning to side helps also.  I think peop would be laugh if they see all antics I go through on pot try be get muscles work go. 

I have learned when bladder real full...will feel pressure up top...like stomach.  Number 2 seems make me feel real sick when lined up go.  Having remember what NEW signals be is hard do...an have re-figure out all time very exhaust me. 

I find it big comfort just be wear depends...takes so much relief fear way me.  No one know they be on so that work well me. 

No one wrote book or script on how be *here* be need help bath room...I know no way make ok in mind.  The mental gymnastics needed this be yond me at this point.  I be more than ready go...but for there still be so much need left do.  I find self gain dislike that no one told me years go dementia...wishing I be had more time get this stuff done.  But when done eve thing...it be time me go.  This was no suppose progress so damn fast. 

<3


alz+
Posted: Monday, March 7, 2016 8:42 AM
Joined: 9/12/2013
Posts: 3608


The_Sun_Still_Rises wrote:

For what it be worth...I have always appreciated the guys my life who be sit when they pee. <3

<3

 

Ha ha ha! Yes, but even then! I have cleaned up pee from men missing for ages, and even when sitting some men can get it on floor.

My guess with Bill is a vision thing. One can test this by aiming (in this case) to the RIGHT and find out if it corrects aim to center. Then notice this applied to driving, shooting baskets, or hitting tennis ball. You can test your vision distortions by home games, do not need a neurologist or eye doctor.

Worry about having to be cleaned makes one live it out NOW when it is not happening. I try to put my worries away or else I feel I am living it out when it might never happen.

 Also finding the part of me that would have been mortified disappears along with loss of ability.

Jo C.
Posted: Monday, March 7, 2016 11:40 AM
Joined: 12/9/2011
Posts: 12158


An issue for guys wanting to sit to void is that the toilet seat opening is often too short to accommodate them well; thus the "over-shoot."

However, one can purchase toilet seats that are elongated, (more oval shaped), that provide  more room at the front of the seat so that it is much easier for males who sit to void.  They are easily found everywhere toilet seats are sold such as at Home Depot and Lowes, etc.

One of the most under diagnosed conditions for males suddenly being in such situations is that of an undiagnosed urinary tract infection.

Some males also can have a prostate inflammation without having actual prostatitis that also can be symptomatic.

Good for males to be checked as much as females for UTIs.

J.


TheSteven
Posted: Monday, March 7, 2016 5:03 PM
Joined: 10/11/2014
Posts: 167


Hi Michael,

One good thing about always sitting down to pee is that you can also pass gas or do number 2 if so inclined after you sit down. I do seem to pass more gas now too, I don't know if its my meds or supplements or the food I eat. I just know I have more gas and I don't know if it is gas or number 2 that has to come out either. In public restrooms if I need to pee and there are urinals I use those but if it is gas I sit down in a stall. Luckily we have elongated toilets instead of the round toilets at home but I still have to make sure I point my equipment down so as not to get on or under the edge of the seat, something I learned many decades ago. Since I clean the toilets and bathrooms in the house I make sure of this habit. If you get into this habit now it should be automatic reflex if cognitively we regress. Hey, we have been going #2 for N decades and we usually pee just before we do number 2 so it should already be a habit.



The_Sun_Still_Rises
Posted: Tuesday, March 8, 2016 9:21 AM
Joined: 7/24/2015
Posts: 3020


I find also it be more confusing signals body be getting.  Like feels around need gas or potty be confuse brain...an brain just want get way...less able deal with cope with it.  No sure if an one else gets that or no. 

When I need go number 2, I just get sick feeling.  I no understand sick feeling.  Indeed, it make whole life miserable in mornings...an I want check out, leave here.  I no want live this way.  Then I go...an think this so silly me.  It makes no sense my brain, an I can no re-program brain know this sick feeling means need go number 2.  It surprising me how consuming sick feeling is, response it...

Strange way brain be break down. 

Wish I could be creative make be like brain break down - break dance thing...but brain no go there.  <3


jfkoc
Posted: Tuesday, March 8, 2016 10:35 AM
Joined: 12/4/2011
Posts: 20254


Sun...do you mean by "sick" actually nauseated? There is a physiological reason that could be happening.