How To Beat Alzheimer's Incontinence

We are on a three day roll. No pee pee. No pee pee pajamas. No pee pee underwear. No pee pee pants......

Bob DeMarco
Alzheimer's Reading Room
Editor


My mother suffered from urinary incontinence long before I moved to Delray Beach to take care of her.

My sister Joanne was the first to notice the problem -- 8 or 9 years ago.

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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).

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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I want to make something clear. I did not arrive at this current solution to urinary incontinence over night. It took years.

Once we finally developed the current solution, it still took many months before it started to work effectively. Here is some good news. The solution is becoming 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 you own needs or you own Alzheimer's sufferer.

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, and frankly, keep more of your hair.
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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?
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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.
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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 adult 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.
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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.
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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.
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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 like 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).

To continue reading -- go here.



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Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. The Alzheimer's Reading Room is the number one website on the Internet for news, advice, and insight into Alzheimer's disease. Bob has written more than 950 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.

Original content Bob DeMarco, Alzheimer's Reading Room

Incontinence Drugs May Hurt Memory

Several years ago I refused to allow my mother to be medicated with depression drugs. Instead, I decided to work very closely with her to try to bring her out of her "funk". Exercise, a good diet, lots of patience and fostering a "secure environment" worked.

Later I discussed my mother's incontinence with her doctor. He told me he could "prescribe" something. With Alzheimer's as a variable in the equation I decided against it. I tired to get my mother to visit the toilet as often as possible. While this was very trying and difficult, I was eventually able to get her into a pattern of going even when she did not feel it was necessary.

It takes lots of patience and perseverance to accomplish these goals. I am not saying its easy. I do believe its possible to improve situations if you can get a new pattern of behavior established.

I did get lots of communication tips from The Validation Breakthrough: Simple Techniques for Communicating with People with 'Alzheimer's-Type Dementia'

The Alzheimer's Action Plan: The Experts' Guide to the Best Diagnosis and Treatment for Memory Problems

Alzheimer’s care classes help but who has the time?

To be honest I am not aware of any Alzheimer's care classes and I am almost four years into caring for my mother. I have no doubt these kinds of classes would be more then useful. It takes a long time to figure out how to communicate effectively and just as long to develop a mind set that allows you to deal with the irrational behavior that comes at you like a tsunami.

In my case, it was talking to others that had come before me that helped me the most. Simply knowing that others had experienced the behaviors that I was experiencing somehow comforted me. Seeing the look of understanding and feeling the empathy taught me an important lesson—I was not alone.

My goal when I started caring for my mother was to keep her out of a nursing home as long as possible. I thought a year or two when I started.


Alzheimer’s care classes help, but few have time

The findings are stunning: Offering simple training to people struggling to care for loved ones with Alzheimer’s disease not only eases their burden — it even can keep patients out of nursing homes for an extra 1½ years.

But the exciting research also runs headlong into a grim reality.

Alzheimer’s caregivers seldom can make time in their daily grind to seek out that kind of help.

And when they do, they too often find waiting lists for services, or programs geared only toward people with advanced disease and not the larger pool in the purgatory that is dementia’s decade-long middle ground between independence and helplessness.

That is one of Dolores Melnick’s biggest frustrations.

Her husband refused to enroll in the “day care” for Alzheimer’s patients near their Hainesport, N.J., home. It was hosting a singalong, and workers were setting up plastic bowling pins, too childish for Bob Melnick.

That meant no time for her to sneak off to a caregiver support group. On weekdays she worries about whether he’ll be OK because he’s home alone while she’s at work.

“I feel bad sometimes because he’s home. I feel bad that I have to leave in the mornings,” Mrs. Melnick says, eyes brimming with tears. “I think he realizes he can’t do much.”

A skyrocketing problem

More than 5 million Americans are living with Alzheimer’s disease. It afflicts one in eight people 65 and older, and nearly one in two people over 85.

Worse, as the population ages, Alzheimer’s is steadily rising. Sixteen million are forecast to have the mind-destroying illness by 2050, not counting other forms of dementia.

Those figures are cited repeatedly in the push for more research into better treatments. But a frightening parallel goes largely undiscussed: As Alzheimer’s skyrockets, who will care for all these people?

And will the long-term stress of that care set up an entire population — once-healthy spouses and children — to suffer years of illness, even early death?

“I don’t think society and policymakers have fully grasped the future magnitude of what we’re up against, and how massive an operation we have to begin ... to deal with this,” says Dr. Richard Suzman of the National Institute on Aging.

Already, an estimated 10 million people share the task of caring for a relative or friend with dementia, the Alzheimer’s Association estimates. Nearly one in four provides care for 40 hours a week or more.

Handling the wandering, aggressive outbursts and incontinence — plus eventual round-the-clock monitoring — is very different than, for example, learning to lift someone who’s physically impaired but won’t fight the caregiver.

Those are skills that families must be taught, says Mary Mittelman of New York University’s School of Medicine, who is leading a new movement to develop customized training programs for Alzheimer’s care.

Today, most learn through trial and error.

Finding their balance

Louise Eckert sits her 85-year-old mother, Dorothy, in a chair backed against the wall and pushes a heavy table in front of her. It keeps her from tipping her chair backward like a schoolchild.

It’s noon, but Dorothy roamed her Norristown, Pa., home for much of the night and just woke for breakfast. Louise spoon-feeds her mother: grapes and prunes mixed into cereal; toast cut into bites; Alzheimer’s pills crushed into cottage cheese so she no longer can spit them out.

The conversation is, well, unconventional.

“I want to hit you,” Dorothy whispers.

“You do not want to hit me,” Louise calmly responds. Minutes later mother and daughter are grinning affectionately.

“She’ll hit you and two minutes later, she loves you,” says Dorothy’s husband, John Eckert, 88.

Not too long ago, the Eckerts despaired of achieving this calm. Dorothy’s mild-mannered Alzheimer’s suddenly morphed into outright aggression. She climbed furniture, pulled the TV on herself, tried to climb out the window.

Area aging services offered little advice. The Eckerts finally found the right mix of medication and caregiver tricks. Take Dorothy’s night roaming, a dementia trademark. Her husband installed bed rails; she crashed over them. He slept holding a belt tied to her waist; she slipped it off without waking him.

Now the couple sleeps on a mattress on the floor. Large wind chimes jangle when Dorothy’s up.

“In the beginning there was pressure. Now we expect it’s going to happen,” her husband says of new symptoms. “You go along with the flow.”

John Eckert brushes aside questions about the strain. He looks fit but has had prostate cancer, a small heart attack and mild stroke. Louise tried to hire a respite-care service so her dad could take a walk. But it requires a four-hour daily minimum, more than they need. Alzheimer’s day care runs in the mornings, when Dorothy sleeps.

They manage because Louise, the couple’s youngest daughter, lives with them and can rush home from her counseling job at a nearby school if needed.

What If It's Not Alzheimer's: A Caregiver's Guide to Dementia

Alzheimer’s care classes help