Dealing with urinary incontinence is difficult, more so when the person suffers from Alzheimer's disease.
My sister Joanne was the first to notice the problem.
Urinary Incontinence (UI) is a stigmatized, underreported, under-diagnosed, under-treated condition that is erroneously thought to be a normal part of aging. One-third of men and women ages 30-70 believe that incontinence is a part of aging (National Institute of Health, NIH).
By Bob DeMarco
Alzheimer's Reading Room
You could put everything I knew about urinary incontinence in a thimble before I started to focus on this problem.
Reading and learning about the problem helped me come to the conclusion that we could do something about it. A little education is always helpful.
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Once we finally developed the solution, it still took many months before it started to work effectively. Here is some good news. The solution becomes more and more effective over time.
My solution is not perfect. It does not work every single day. It does not work every single night.
I can say this with some confidence -- we no longer experience the flood.
Now its more like the little tiny accident.
When we have a problem with incontinence during the day it usually happens because I am tardy or less than perfect in following the program.
If you decide to try this, it is going to be a lot of work. You will need to tailor my solution to fit your own needs and schedule.
If you are not ready to give this program everything you have to give -- you will likely end up frustrated, or quit.
If you make this work you will end up with a wonderful feeling of accomplishment.
If you really want to solve the problem of urinary incontinence, I suggest you try a little role reversal.
If you were the one with Alzheimer's and urinary incontinence, how would you want to be treated?
Would you want to be yelled at? Treated like a baby? Would you want to listen to someone constantly complain about how you are peeing all over yourself?
Would you want to feel all those bad vibes being directed at you?
I tried many times to do something about incontinence over the years. All false starts. I gave up every time.
Finally, the problem was so bad that we were using 14 sets of pajamas and 24 panties. My mother was blowing through 3 pajama bottoms a night. Day time, same story with her cloths.
All I can say is, that is a lot of wash.
My mother was suffering from incontinence from day one.
I turned to everyone I knew. I listened to their ideas and advice. I turned to women of all ages.
Most of the advice centered around two solutions -- pads and incontinence wear (diapers).
I have to laugh at myself now as I remember my first trip to the store. I figured I would go in and grab what I needed and get on with the task at hand. Keep in mind I am a man.
Well the aisle that contained these products in Walmart was gigantic. It just went on and on. I think I spent more than 30 minutes trying to figure out which might work for the problem at hand.
In a way, it was mesmerizing. Oddly, since I am a curious person it was interesting to me. Later I thought to myself, wow, this is one big problem.
I decided to try the adult diapers. At the mention of this, my mother pitched a fit.
I would get here to put the diaper on grudgingly. As soon as I wasn't looking she would take the diaper off.
If you are an Alzheimer's caregiver you can already imagine the things she was saying. Some of them not very nice.
Let me tell you what I was accomplishing -- I was making my mother miserable and mean. This in turn was making me miserable. The dreaded stomach ache.
Here is what I started to learn.
My mother did not believe there was a problem. It was embarrassing to wear a diaper. It was a sign of old age. If she didn't think there was a problem she would never accept the solution to the problem.
I thought to myself, well if there wasn't a problem I wouldn't wear a diaper either.
I gave up.
Here we were again. 14 pair of pajamas, 24 undies.
Now I decided to try the pads, the inserts. I thought I had a new idea that would work.
I convinced my mother's elderly friends to talk to my mother and tell her how they used the inserts, pads, and diapers. How it was a normal part of getting old. I coached them to be very enthusiastic and tell her how great this solution worked. I asked them to smile and laugh all the way.
My mother listened -- in went the pad.
They went home and out came the pad. I know they say that the person suffering from Alzheimer's will eventually get use to the pads and every thing will be beautiful.
I tried and I tried and I tried. I gave up.
I don't know why I didn't think of this sooner but I finally decided it was time for a trip into the Alzheimer's bunkhouse. I took my big newspaper pad with me and wrote -- problem incontinence -- right in the middle of the page with a big circle around it.
Then I started writing everything I could think of and remember about this problem all around that circle.
Then like magic the light bulb went on in my head. I thought to myself, if I can do this I'll be like the Leonardo da Vinci of urinary incontinence (I'm Italian by the way).
Every time we had an accident I wrote down the time and what happened. Big flood, little puddle, couple of drops. Floor shot, panty shot, pants shot. Number one, number one and number two (yeah, I had to work on the poop problem separately).
Soon I could see a clear cut pattern. Once I had the pattern identified problem solved right?
The solution to the problem was obvious. Get my mother to pee on a schedule. Better yet, get her to pee more than once before the next scheduled accident.
Keep in mind, my mother has Alzheimer's disease. So its not like I can explain the program to her -- the solution. I would have to do that ten times a day every day.
My mother doesn't know she has a problem. If you ask her she will tell you with great confidence that she never had an accident in her life. She never had the dreaded pee pee pajama.
My sister Joanne will testify to this. When I say to my mother -- time to pee -- she will say I don't need to pee. Then she will say -- I just peed. Trying to talk her into taking a pee is like putting a Democrat and Republican in the same room and trying to get them to agree on something.
Or at least that was the way it was .... I finally realized I had to change this paradigm.
If you are with me so far. Simple solution -- pads and diapers -- didn't work.
Next simple solution, get my mother to pee before an accident is likely to happen. Didn't work at first.
Whew, the day came, I finally understood the problem. The problem is not urinary incontinence the problem is
How to get my mother to pee 8-10 times a day.
Thank goodness, I finally understood the problem.
Now all I needed to do was marry what I already new worked well with my mother, with the new solution to the dreaded PEE PEE problem.
My solution is a combination of good communication, Pavlov's dog, and positive reinforcement. In other words, a combination of Communication 813 and Psychology 101.
Here are my tools: coffee, potato chips, Cheese ITS, mounds, breakfast, lunch, dinner, ice cream and scratch offs (lottery tickets).
I also use my forehead (touch) for constant positive reinforcement and good communication.
Here we go.
7 AM -- Mom wake Mom up. Give mom the thyroid, alzheimer's and blood pressure medication. Get her out of bed and into the bathroom. Pee. Put mom back in bed. (big big smile if we made it through the night without the dreaded pee pee pajama).
8:30 AM -- Coffee time. Get mom up, get mom into bathroom, pee, get mom into kitchen, put coffee under her nose. Tell mom breakfast is on the horizon. Listen to mom say, good, I am starving. Reassure mom that breakfast is right around the corner. Put the comics and crossword puzzle in front of mom.
9:30 -- Tell mom its time for breakfast. On the topic of breakfast mom always says the same thing -- good, I am starving. This is good because I am now going to marry breakfast with a good hearty Pee Pee. I am trying to introduce a pattern here -- I call this one, Pee Pee leading to egg. The egg is the positive reinforcement once mom pees.
I usually get my first resistance of the day -- I don't need to pee, or I just peed. Put my forehead on mom's forehead tell her in a nice calm voice how great breakfast is gonna be (usually use the word egg whether she is getting an egg or not).
Gently explain to mom how she needs to pee now so she won't get interrupted while eating.
Note here: mom is always hungry. She tells me all day long, over and over, I am hungry, I am starving. Spend a week with us and you'll go nuts hearing this. I use to go nuts hearing it.
Then? Then I finally figured out I can use this to solve problems -- problems like the Pee Pee problem. So I took something that was driving me nuts, and turned it into an arrow in my quiver -- a tool. Food.
Ok, hold on. I'll be right back. I have to stop writing and typing for few a minutes. Its time for mom to pee.
I'm back. Good day. No bribe. No snack. Mom cooperates. Want to know why? Because we are getting good at this and we have the pattern -- ESTABLISHED.
Tell mom its time to watch Ellen. Remind mom much fun it is going to be to watch Ellen. Get mom up out of chair and put my head on her forehead and say, we need to take a pee.
(Note: Please note the use of the word WE. I learned that the word WE works better than the word YOU in this and every sitution with my mother).
If mom resists by saying I don't need to pee, or I just peed, I remind mom it is going to be easier to do it now. Easier then getting back up off the sofa and coming back to do it later.
I often interject something about how keeping the tank empty is a good thing.
Lunch time. The word food always works with mom. I say, Mom lets go. Where are we going she asks? Its time to have lunch. Dotty says, Oh good, I'm hungry.
Stop off for a bathroom pit stop on the way to lunch.
We always eat lunch in sections. Take our time. More or less like a three course meal. Yak with mom and get her to look at the crossword puzzle.
I will introduce another brief side note here. Next up, I give mom the magic elixir. Another one of my brain storms that took years to figure out, but solved our problem with bowel movements.
Lunch over. Time for the pee pee pit stop.
Time to move mom back to the living room. Get her situated and ready for Rachael Ray.
Special Note: I changed this to the Singers and Swing music channel. This helped Dotty remember as she would frequently start singing songs from 30s and 40s. This often put her in a good mood. You never stop learning when you are caring for a person living with dementia.
Ah, relax time.
Uh oh, Rachel Ray over. Time to what? Pee Pee. See, you are getting the "hang" of it already.
If I miss this scheduled pee pee pit stop by more than 30 minutes its gonna be the yellow river.
This is when I use one of the following: potato chips, Cheez Its, or whatever we have that will make mom's mouth water like one of Pavlov's dogs.
Instead of the big battle in the old days, mom agrees to get up, and we discuss both the snack and the pee pee pit stop on the way to the kitchen. Works like a charm. Remember, pee pee first, positive reinforcement second.
Another side note, mom usually gets six potato chips. In the old days she would complain about how poor we were that she could only get 4 potato chips. Now she is happy with 6. My mother's weight has been stable in a 4 pound range for several years. This after I knocked 18 pounds off her in the first few years.
By now you are should be getting an understanding of the program. Every pee gets followed by the positive reinforcement. Every pee leads to something good.
Late Afternoon Pee Pee
We usually go to the store or I take mom out for a drive around 4 30. Maybe we go visit a friend. Either way, we take the pee pee before we go out the door. She always says the same thing -- I don't need to pee. I gently remind her we are going out and we could be gone for hours. She pees. After the pee I tell her we are going to get this or that at the store -- maybe lottery tickets. I always put my forehead on hers and tell her we are going to have a good time. Positive reinforcement.
We usually get back around 6. Immediate pee pee as soon as we come in the door. We are in luck on this one. We have a bathroom right near the front door.
If we can't go out for some reason. The weather, my mother is not feeling well etc. This is when I use the lottery scratch off. I just tell mom -- come on, we have some new scratch offs. She gets up, I gently guide her to the pit stop, and we accomplish our mission -- together.
Before dinner. Pee pee. After dinner. Pee Pee.
7 30 PM
Lets get a Mound (candy). Hey, I gotta pee, let's pee on the way. Teamwork pee.
Pavlov dog -- ice cream coming up after the Pee Pee.
Bed time. Pee Pee.
I learned after lots of trial and error that when it comes to Alzheimer's you can change things.
However, it is not about trying to teach or reteach a person suffering from Alzheimer's how to do things. You can't. They can't.
I did discover that by looking beyond the obvious you could accomplish goals by establishing new consistent patterns of behavior 9a routine so to speak). This is where the teaching comes in to play.
In this case of urinary incontinence my mother did not want to pee, and when she did need to pee it was too late.
I am not sure why she wouldn't pee. Maybe she didn't want to exert the energy to get up and move.
Maybe she doesn't like the toilet.
Or maybe, she doesn't think she needs to pee or thinks she just peed.
Does it really matter? I wasted a lot of time trying to figure this out. I thought if I could figure it out, then I could do something. I was wrong.
Here is what matters.
She wouldn't pee until it was too late. She does suffer from incontinence.
It really didn't matter to her if it bothered me or not. Why? Because she didn't remember it happening. In fact, she is convinced it never happened.
Please Note: not one drop of pee pee on the bed in over a year. Special note: this statistic grew to be many years believe it or not.
It was not easy to figure out the real definition of the problem.
In this case, I finally realized the real problem was the accident itself.
When was it happening, what time, how often, what was going on when it happened?
I learned this by writing it all down in a diary format. Once I finally had a real understanding of the problem, I finally started thinking about a solution that might, could and did work.
In the old days it use to drive me crazy when my mother would tell me she had not had a potato chips in years even though I know she had them yesterday.
I came to a simple conclusion. I'm going to give my mother 6 potato chips four or five times a week.
Every time I give her potato chips, I am going to get her to take a pee. I am not a big fan of potato chips. They are not good for you. As a result, I didn't want to feed potato chips to my mother.
Now? I am a big fan of the potato chips. It no longer drives me nuts. It is one of my best friends. I turned a negative into a positive. The potato chip is now the positive reinforcement I need to get my mother to pee without pitching a fit.
Sometimes you have to go into Alzheimer's world.
Listen. Think. What are you hearing? Is their a message in there? Think about the words for a while. Is your loved one sending you a message?
Ask yourself this -- what came first-- the pee pee or the potato chip?
I'll close by saying this. I learn the same thing every time -- it is the simplest, most obvious solution that works best when you are having a problem with someone that is living with Alzheimer's disease.
I do wonder. How come it took me so long to figure out the real problem? I guess you could say, most of the time I can't see the forest for the trees. Or maybe, just maybe, my mom is trying to tell me the solution and I'm just not listening.
My name is Bob DeMarco, I am an Alzheimer's caregiver.
My mother Dorothy went to Heaven on May 25, 2012.
This is a revisit of an article that was previously written and published on the Alzheimer's Reading Room.
As always, your comments, insights, and reactions are welcome.
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